Today is my first day with no testing.  I woke up and logged into work.  Got some much needed work done. Then decided to take a short break to get some lunch.  We headed over to Harry Caray’s 7th inning stretch at the mall.  Well… At this rate,  I am hoping we get back for the grocery delivery at 3….. Apparently is is snowing today.  Who knew?



I’m writing this as we go, so we will see if we made it out a bit later. 

We went to the Harry Caray’s museum 



 Stopped at Godiva… Naturally and then I stopped to get Rosie matching PJs for her and her American Girl Doll.  Disclaimer-I have a MASSIVE headache and took a pain pill which will contribute to the PJ purchase.  This place is like little girl crack.  

Last stop was supposed to be Macy’s as I need eye makeup for the hospital. Can’t use old makeup as it could contain germs my body will not be able to fight off.  But we saw a window of no snow and took it.   We nearly made it back safely to the hotel,  but I took a nice fall on my behind.  Not to worry,  I have lots of padding (stop laughing Sue Grieco ❤️).  It really was my own fault for not using my cane. 



Last night we had a wonderful time.  Our very dear friend (more like family) Jeff was in town and met us for dinner at Fago Da Chao.  It was so great to see a familiar face and have some time off of thinking stem cell non stop.  



I also booked Fran and Rosie’s airfare to come and visit.  I miss my baby something fierce.  Thank God for all those that love her and are taking care of her.  Fran, Vonna, Krista Brooke, Melissa and Dan,  I don’t know what I would do without you guys.   I love you all so much.  Thanks for being the type of people that can take Rosie in as your own and make her feel special everyday. Well,  she technically is your own Fran… But you deserve a very special thank you and I love you anyway. 

That is all for now.

Xoxo

Colleen 

i am not going to lie.  I have been a nervous wreck for the last 2 weeks waiting for this appointment.  I keep waiting for the other shoe to fall,  but it didn’t.    I went in and took the peg and math test.  The math test I ironically bombed (stop laughing coworkers). It was actually more of a short term memory test and that is where the problem lies. This was me waiting to see Dr Burt: 



Thanks once more to my rock solid support team:



I saw Dr Burt and it was a much better meeting then last time.  He is very down to business,  but I was prepared for that.   He wanted me to have my NMO checked again to ensure I did not have Devics Disease.  Devics is similar to MS,  but the protacol for transplant is different.  Thankfully,  my awesome Neirologist at home had already done that for me twice, so all parties are pretty sure it is a go for the MS protocol.  

So now I wait. I am free until I am admitted to the hospital for chemo on 3/9.  We opted to stay close in case additional testing is required.  Fran is going to come here with Rosie for spring break and  they all said that she is fine to be near me after that first dose of chemo.  

Thanks for your prayers everyone and thank God for listening.

Xoxo

Colleen

Today I had a 10:30 appointment with a phycologist for clearance to proceed with the treatment.  I started out by telling her that my story may be a new one for her.  She later told me that when I said that she thought… No way… Well, way!  

I’m pretty sure most of is that have lost loved ones in tragedies such as 9/11 are capable of handling the unknown in ways that others don’t understand .  For me,  I try to stay prepared for the parts of a situation that are known.  Sometimes that causes me to try and control the uncontrollable. Thankfully when that happens,  I have a plethora of loved ones to pull me back. Apparently, that is very healthy… Who knew.  I told her of my fiancé and father in laws loss on 9/11,  I told her of my mothers battle and conquering of esophageal cancer,  my best friend destroying the leukemia that tried to take her (you go Jen),  my adoption of Rosie and my diagnosis of  MS. I told her of each medication that failed and how I sought out a way to end the life altering side effects.   I told her of the family and friends that support and help me everyday. She sat there as most do with her mouth open as I spoke.  She said your story is both tragic and uplifting.  I said my story is just one filled with blessings. At the end she told me to write a book.  I think that means I am cleared.  She was an lovely woman and I am very glad I had the chance to meet with her.  

More to come later as I meet with Dr Burt for the final clearance at 3:00. Please pray all goes well.   I have come so close to turn back now.

xoxo
Colleen

Nothing like waking up and running to get a echocardiogram of your heart in 13 degree weather. There was a mix up and my original appointment was cancelled, so last night I was told my new appointment was at 8:30. Unfortunately, I didn’t realize the location was changed.  The good thing is that everything is in the same place.  So I just had to go down a few flights and I was good to go.  The heart echo was no big deal.  Some cold jelly and a few beeps and I was on my way.  Next we had a few hours to kill so I went across the street to the other building (thank God for enclosed walking bridges) to get the chest X-ray that I was supposed to have the night before. This was by far the worst thing so far because the wait was nearly an hour and I was right in the middle of watching Property Virgins when I was called back for my 30 second X-ray.  Now I will NEVER know which house they chose.  I really hope it was the one with the shorter commute. Anyway.  We ran over to thecafeteria  next to kill some time before my vein check.  The most perplexing thing about the vein check was the name.  There was no checking of veins… It was more like harvest orientation.  I even got to see a very nice man getting his stem cells harvested.   This picture says it all.  My face had makeup blown all over it and let’s not even talk about the hair. 





After the “Harvest Orientation Extravaganza” as I have newly named it,  we were free for lunch and more importantly…to search for the ugg hat. Ugg store #1 was a bust.  So we drowned our sorrows over lunch at the Tavern on Rush. Sorry about the picture.  I remembered to take it half way through. 



Next,  we are back on our search for the elusive ugg hat.  We wanted to check here,  but as you can tell…. That was a strict NO WAY!



We went to Bloomingdales and Macy’s and both were out of them so I have decided to order it like I should have on Monday!  Now,  we are back at the room sitting for a bit and trying to get some rest before tomorrow.

Tomorrow’s Agenda:

Phycological Evaluation to see if I can handle the stress of the transplant and recovery process and finally Appointment with Dr. Burt.   

Unless there is anything that came up on the pretest that would require additional testing,  I am free until a week from Monday.  That is when I am admitted into the hospital for chemo #1.

Xoxo

Colleen

Ps- did I mention it was cold here? 

Well, we made it to sunny Chicago! We left 79 degree temps for the crisp 20’s. That’s ok, I’m not here for the weather. We got to the room, unpacked and went to the Local Chicago for a bite to eat. I ordered a ton of groceries and other things we will need from Instacart this morning . They are set to deliver at 7:00 so this way I HAVE to be in the room during the Oscars. I can’t wait to relax.

Tomorrow is another long day. I start out with a pulmonary function test, labs, EKG, chest X-ray and finally MRI of brain and spine! Phew! I’ll post more tomorrow and post some pictures if I can sneak them. Below are some pictures. My favorite is the beet salad and the runner who thinks its May in San Antonio!

Thanks again to everyone for all your kind words and support. I am truly overwhelmed.

Xoxo
Colleen

This past week has been a blur. I have been non-stop since I found out I had 6 days to get to Chicago for pretesting. I have been planning this trip in my head for months now. What’s took me off guard was the emotion. I try not to look too far in advance and try to plan… Just in case. What I didn’t plan on was turning into a zombie the second I got home from work every night. I travel (or really pre-MS…I traveled) for work… A lot. I have left Rosie with my parents or her Nona many many times. I don’t know why this time is so different. I NEVER expected it to be. We planned it so
God willing I would see her every 2 weeks…. Still, I can barely look at her without bursting into tears. Ironic since she is the reason I searched so hard to find something that would give me the chance at a normal life. I adopted her at 15 months from Vietnam. She saved me when she became my daughter. I owe it to her to do whatever I can to prevent a life where she is my caregiver. I owe it to the woman who gave her up for a better life and I owe it to me.

So, 6 large bags and 12 hours to go before I officially start my journey to a new life. I am ready and my ARMY of support is there for me as well. I have the best friends and family on the world. Please pray for a quick and successful pre-test week so I may begin mobilization on time.

Xoxo
Colleen

PS. For those of you who are wondering, Rosemary is delighted at the thought of spending weeks at a time with her Nona! Secretly…. I think Nona is just as happy!

PSS – my mother would like to know why my brother and nephew decided to cut their hair. Thank God she is pretty

Looks like we are on track to leave Sunday for cold and snowy Chicago. So I will keep this post short as I am on the verge of a stress panic attack.

Hotel – Booked
Air – Booked
Car Service -Booked
Packing list – completed

Preparing my daughters clothes and info for a month or two. HAVEN EVEN STARTED!

Living will and will signed and notarized.

Dental Clearance complete

Therapist Evaluation and clearance… No idea so I am trying to get an appt here while the ladies in Chicago are trying to see if they can get me one in Chicago.

Well, my sleeping pills kicked in so I better log off. Thanks again for all the prayers. I a, so truly blessed!

Colleen

I got the news today that I need to be in Chicago in less then 1 week. WOW! They are still working on the details, so I won’t post that until they are firmed up tomorrow and I am able to make a more detailed schedule page…. But WOW!!!

I am so very lucky to be given this gift. A gift that will God willing stop the progression of my MS, allow me to be on the front end of what could eventually be labeled as the cure to MS… I am speechless. I am blessed and I am of course a nervous.

As soon as I got word last week that my insurance was approved, I started feverishly trying to get things in order. Not knowing how soon I may have to leave, I started buying chemo hats, all new toiletries and a number of other things I listed on the packing list tab. I shopped for Rosies clothes, so she would have both warm and cool outfits for the ever changing Texas weather. I bought some ridiculous items while I was heavily medicated getting my IVIG treatment…… Why yes, I absolutely need Jo Malone bath products from Neiman Marcus…… Again, heavily medicated.

So with the help of my parents and Fran, my dentist, my very good friends here in SA, my wonderful coworkers and work family… I will be ready to leave in less then a week. WOW!

Shocked in San Antonio