This just in… Chemo is back on!  The doctor said I sounded so much better and we should go as originally scheduled.  Special Reporter Rosie is on hand with a special report!

Well,  chemo is officially delayed. 

My parents went to urgent care today because they both are still coughing. They have the same symptoms as I do (minus the MS add ins).  They both came back with bronchitis. I got nervous because even though I am fever free I still suspected a bronchitis diagnosis would change the verdict.  I was right. Dr Burt called in a Zpack for me and it looks like I am delayed until at least Friday.  I pray no longer. My job this week is to get better.  I will focus on that.

Xoxo

Colleen

Ps- Rosie and Fran are in transit! 

This week, with all the chaos of working, testing and wondering… I surprisingly had a good MS day.  If there is such a thing, that is.  I think it was early in the week, I was walking well and didn’t need my cane, my pain level was not horrible, I was completing sentences, even thoughts….  for a brief moment I questioned myself and my decision.  Please realize when I say brief, I mean brief.  I have officially taken longer to write about the moment then to actually experience it.  I honestly think it was my fear. The fear of the dreaded jugular catheter, the chemo, the picc line (I thank Jen for that fear as I can vividly remember her getting an X-ray because she swore she felt it in her heart- thanks bestie), the recovery and yes, the fear of how ugly my misshaped head is going to be (I feel all sorts of lines under my hair… I really wonder if they used tongs on me when I was delivered).  Today, I KNOW I made the right decision.  I can honestly say it has been one of the worst  MS days for me.  I know it’s because of this cough, but I am almost thankful.  It in a way let’s me go into mobilization with guns blazing.  Go ahead MS…. Have at it because you are about to go down!!!  With all that, there is one huge unanswered question… how can you not remember if they used tongs mom???

Anyway,  I have an untold story that must be told!   My excellent adventure to Target!   Oh, before I began, The doctors office confirmed cough and all I am a go for chemo Monday.

Last night my spacticity was so bad, I  went to get a massage.  Anyone who knows me, knows that there is no relaxing while I am awake.  I am constantly thinking about something…. More often many things.   I get a brilliant idea.  I am going to take a cab and go to Target and have one last horah by myself before I am unable to do anything by myself.   I know, I’m so wild.  I had a few odds and ends to get and I had every intention of staying in as much as possible today and tomorrow.   So as I am getting my massage I am compiling a list of things I need.  A new swifter because we used my hospital swifter in the hotel, a toothbrush I can use in the hospital Monday and leave there, anything that requires me to use the cart escalator…, really important things.  Before I knew it my massage was over and it was time to go.  I hop in a cab and head to Target AT RUSH HOUR. I get there after like a million hours and remember my mother saying she wanted a sweatshirt from the Gap.  I run in the Gap buy the sweatshirt and I’m thinking..  Look at me.  No cane… All about town. I am bad a$&!   I go into Target and for a moment I think that the downtown Chicago Target has turned into Grand Central Station at 8AM on a Monday.  I kid you not…. There was an insane amount of people there.  I think, I am a NYer. I can do this. The hell with MS sensory overload.  I own this!  Then, like in one of those slow motion tv moments,   I imagine every person in there and all the germs they are carrying.  Who is sneezing, who is blowing their nose, who is coughing (oh yeah, that’s me).  Every one of the five million people in Target are going to prevent me from getting chemo on Monday.   Something snaps me out of it… and by something I mean 4-5 people that almost trampled me.  I quickly pull it together and go into defense mode.  Now I know you are all on the edge of your seats wondering how I could possibly defend myself…. I’m going to tell you how.  I open my purse grab my handy travel size Lysol and spray my cart down!   Oh yeah!   Whose bad!  I shop as fast as I possibly can, which is why I was probably not thinking… Hey Colleen, you have to carry this stuff.  I follow the nice lady who tells me there is no wait on register 2. I unload my cart… I reload my cart when I realize there is nobody on aisle 2 because the register is broken.  I unload my cart again on register 3. I smile as the cashier looks at me wondering who the freak applying hand sanitizer is.  I pay for my items and then, right then it hits me.  Oh no,I have to carry all this stuff. No worries… I am bad a$&,  I’m going to hop in a cab at 6:30 on a Thursaday. No one else will have this idea.  So I head out the revolving door.  This alone with MS is a task as my balance and coordination are not stellar.  I cross the street so I am heading in the correct direction of the hotel.. Because I am a NYer and that is how you do it .  I look around and see about 30 cabs… All filled.  I move around quite a bit until I find the best location and I lift my hand to hail that cab.. Only I can’t because I am holding 7 Target bags and a swifter. Ok, I consider dropping them all, crawling into the fetal position and going to sleep on the sidewalk but I think twice about it because it is about 2 degrees and my gloves are still in the Gap bag where I shoved them.  Then like a breath of fresh air I see a cab with it’s light on.  It shifts lanes.  It is coming for me.  I reposition the bags and get ready when a tall blonde woman comes out of nowhere and steals my cab.  It hurt.  It really hurt.  I suck it up and about 10 minutes later I see another cab.  I look around for my competition… It’s all clear.  No one else is waiting for a cab.  The cab pulls up right next to me and i open the door and get in.  Before i can shut the door a woman that I’m pretty sure I gave $5.00 to like an hour before comes at the door and starts yelling at me in what I now believe is pig Latin.  The door isn’t shut and the cab driver pulls up enough for me to safely close the door…  He asks me where I am going in a fabulous Jamaican accent that makes me forget for a second that it is 2 degrees out and I was just verbally assaulted in a language I’m pretty sure isn’t legit.  I tell him and he goes, “oh no… Well, we will try”.  What?  There is no trying here .  I made an enormously stupid decision while getting a massage  and I need to fix it by crawling into bed.  He goes on to tell me there is a huge protest between us and the hotel and he is not sure if he can even get there.   CHALLANGE ACCEPTED!  I whip out my phone and tell him which way to go to get me as close as possible to the hotel.  We are like Bonnie and a Jamaican Clyde, my cabbie and I.  What an adventure. I text my dad and tell him to get ready.  If I can’t make it back, by God my Swiffer will.  By God’s grace he somehow gets me to the hotel door.  Then another  man who I’m pretty sure gave me five bucks a couple hours before whips open my door and grabs my bags (thanks again Dad)l. I generously tip my partner in crime and nearly fall out of the cab.  I did it, I was home (temporary home anyway).  

Now that I think about it… That’s probably why my MS  is so bad today. 

Xoxo

Colleen

I realized last night as I was giving my mother a lesson in stem cell transplants,  that there are probably many of my friends and family members that don’t really know what is in store for me.  I thought I would give a little brief overview of what the first part of this process is. Since they will be using my own stem cells, the process is really 2 parts.  Taking the cells out of me and then putting them back in.  So next up for me is taking the cells out (mobilization and harvest).  This process takes a little under 2 weeks and is mostly outpatient.  The thing to remember here is that it isn’t really the stem cells that are going to “fix” me. It’s actually the chemo…more accurately a combo of the 2.

Mobilization

Mobilization is a 10 day process where my doctors and nurses will use chemotherapy and other drugs to mobilize my stem cells from my bone marrow into my blood. I will stay overnight in the hospital while I receive chemotherapy along with IV fluids to flush the chemotherapy out of my body.  The shock of the chemo will cause the stem cells to leave my marrow and then the goal is to flush the chemo out as quickly as possible so that it isn’t sitting in my bladder.  They will give me a bunch of medications with the chemo in order to limit the side effects, but fatigue, nausea, hair loss and other side effects are likely in store for me. Once I have had a full 24 hours of fluids, I will be discharged back to the hotel. Back at the hotel, I will have to monitor my health closely,  take my temperature 2x a day.   5 days after the chemo, I will begin to give myself Neupogen shots at 7:00 am everyday. These shots will stimulate my stem cells to continue to move out of the bone marrow into my blood.  They will also cause some bad bone pain as this process is happening.  Because my immune system will be so compromised, I will begin to take 2-3 antibiotic and antifungal drugs to prevent infection. 1 week after chemo, my immune system will drop and at this point, I will have to avoid sick people and crowds.  I will have to wear gloves and a mask when leaving the hotel and have bloodwork taken multiple times.  This is when I will be at my most vulnerable stage and most suseptable to infection and sickness.  2 weeks after chemo I will lose my hair and it will take some months to come back. 

The reason we mobilize the stem cells is so that they can be easily filtered out of my blood.  That is called the harvest process.  

Harvest

Harvest day is the day they will take the stem cells out of my blood.  That day I will go and have a catheter put into my jugular vein (yeah, tell me about it).  After that is complete I will head over to the blood center and have a blood sample taken.  I will then have about 2 hours free until the sample comes back.  That will tell the blood center team about how many stem cells they can expect to harvest that day. Typically, Dr. Burt needs 2 million.  Once we have the approximate #, I will get hooked up to a machine that will draw blood, filter it for both plasma and stem cells and then return it to my body.  This will take anywhere from 4-6 hours. If everything goes according to plan, I will then have the cells sent to be counted (about 2 more hours).  If the required number is harvested, they will pull the catheter out of my jugular, patch me up and send me on my merry way.  If not, I will have to return in the morning to have more cells harvested. That means I will need to sleep with that thing in my neck.  OH HECK NO!   

Once I get through the harvest process I’ll tell you all more about the transplant process.  

Well, I’m exhausted and am going to head to bed.  Tomorrow, I will tell everyone the story of my solo adventure to Target.  You should all be on the edge of your seats.  It’s that good.

xoxo

Colleen

Ps – 2 more sleeps 

I have been a hot mess since I woke up this morning… with a cough.  I tried to ignore it and as I do everyday, I frantically checked my emaIl for anything pertaining to my schedule.  This morning, I received an email saying I had new test results in “my chart” (the online chart system the hospital uses).  I go online and it lists a whole bunch of tests with the results as “see comments”.  There were no comments,  I immediately sent an email off to St. Kate at Dr Burts office to see if these were the results of the “false positive” tests we were waiting on.  I also tell her about my cough assuming it is the plague or something just as nasty that will prevent me from having chemo on Monday.  By noon, I still didn’t hear back so I called and left her a message.  She called me back and it looks like the results released into “my chart” we’re the original results.  It was a good thing I called though, because Kate called the lab and apparently, they forgot to run the one test and could not re-run the second because the blood had expired.  She also said she was going to check with Dr Burt about my cough. 

I quickly get ready and we all go the hospital as quickly as possible to get my blood taken again.  At this point, I am literally about 30 seconds away from a nervous breakdown.  I sit down for my # to be called when an elderly lady starts crying and yelling into her cell phone at somebody that she is so sick and has blood coming out of every possible place in her body. I got the feeling that she is a frequent visitor of whatever doctor is at that location because no one was even lifting an eye her way.   I am typically concerned at these things, but at this point my main goal is… Do not sit anywear near this woman because I am pretty sure whatever she may have I do not want to get.  That will for sure hold up my chemo.   My name gets called and I quickly bathe in purell before heading into the lab.   The blood draw takes all of 1 minute and I am back downstairs meeting my parents.       I check email again and there is one from Kate telling me Dr Burt is not concerned with the cough and call if it get worse.  

My nerves have me a wreck, so we head out to get some food.  It was about 2:00 and I haven’t eaten all day.  I look on yelp and find this nice little place not far from the hotel called Doc B‘s.  It was great.  We had the best lunch…  The grilled artichokes were the best we have ever had.

Grilled Artichoke Appetizer 

Mom’s chicken with roasted red pepper sandwich

My Tofu Teriyaki Noodle Wok.  Next time I will say no kale.  There was WAY to much in there, but it was still delicious. 

My fathers Reuben.

After lunch, I check my emaI, and there is another email from St Kate saying she needed me to fill out a few forms that I missed.  I reply to her saying I will drop them right off and ask when I will know if we are still on for chemo on Monday.  She writes me back saying we are on schedule and I need to go get my meds at the Walgreens in the hospital.  THERE IS A WALGREENS IN THE HOSPITAL. I really do ❤️Walgreens.  We go to the hotel to print the forms and find out that the entire block has no internet.  Thank God I through flip drive in my many bags.  We run to the room, use my iPad as a hotspot to get onto the computer and save the documents.  My dad runs downstairs to print them as I wrap gifts I bought for the 3 nurses at Dr. Burts office.  We take a cab to the hospital I run to my happy place to pick up my prescriptions while my dad drops the gifts and forms off to Kate.  Thankfully, my $8,000 in medications came to only $138.00.  My work is dropping my Aetna POS II at the end of the year for a cheaper Aetna and I could cry thinking of those of us with  chronic illnesses and the out of pocket costs that we will incur.    

So, an Ativan to prevent a nervous breakdown , a pill for my headache and eye pain  and 4 cab rides later we are in the room and ready to put this day behind me.  3 more sleeps until my baby is here.  That fixes everything.

Xoxo

Colleen

Disclosure – I have to be totally honest here.  I believe the cough may have been from a little Neosporin I put in my nose last night.  I am so freaked out I’m going to get my mothers sickness that I am doing whatever I can to prevent it.  I saw this thing on Pinterest that says to put Neosporin in your nose during flu season.  So I text my brother in law, Dr. Dan and he calls me a fool and tells me to take a darn Ativan.  Apparently, I need to stop diagnosing myself and listen to the doctors.  My cough is much much better tonight.  God willing it will stay that way.  Lesson learned!

Well today started out great.  I was working when I got a call from my Fairy Godmother Insurance Case Worker letting me know that all has been approved and sent over to NW.  I am a go for mobilization on Monday.  She is really good.  I told her that I  have about $7500.00 in prescriptions pending insurance approval at walgreens.  She if even going to check on that and get them pushed through for me.  Yeah!  

Soon after I got a text from Rosie’s teacher (and now a dear friend) with this.  It almost exploded my heart.



At lunch,  my dad and I took a ride to Target… Well, that was where we thought we were going.  It turns out that right near Target is a 2 FLOOR WALGREENS!!!  For those of you who know me, know I am obsessed with Walgreens and tell everyone it is my favorite store.  The sad truth… It really is.  Lol.   Just look at it!  Wow



We got off and decided to get a bite to eat.  We stopped at Gap kids to get Rosie some sweaters.  We left the Gap,  stopped to get a bite of food (no pictures… It wasn’t that good) and decide that everything we need can be bought at Walgreens.  Walking there I notice a Magnolia Bakery.  They are one of my favorites.. Thanks to My friend Mary who often brought Rosie and I cupcakes from their Manhattan store.  OMG



We finally made it to walgreens and once I stopped staring at the sushi bar they have… I know right!



We got what we needed and headed back to the hotel for more work.  It was really nice to get it for a bit and see some sights on our way to my dream Walgreens.  Did I mention it had a full liquor store???   

Xoxo

Colleen



Original Macy’s. 

5 more sleeps until my baby is here in Chicago.  I can’t wait to see her in person.   I am so proud of her.  She passed another speed test in math AND she has a picture that is submitted to the Young Masters Art Show.  What a day for her!!! Way to go Rosemary!!!

On another note…. my mother has a nice case of bronchitis so we are in disinfecting mode at all times. They have her on an inhaler, Cipro and Teslon pearls.   I keep telling her to go and get a steroid shot to help it on it’s way. If she is still coughing on Monday, she won’t be able to stay at the hospital with me I get chemo.  Hopefully she gets better or goes back before it’s too late.  So far, so good for me.  We all know what happens to an MSer when we get sick.  I had it in Nobember and lost nearly all the eyesight in my left eye. 

Kate from Dr. Burts office called me this afternoon. My test results have been submitted to insurance for the last and final approval.  My Fairy God Mother Insurance Case Worker promised a 2 hour turn around.  She just needs all the test rests and Dr Burts OK.  Kate also mentioned that 2 of my blood tests came back positive.  They believe that they are false positives from the IVIG, so they are doing extra testing.  They expect the new testing to come back with a negative result. Apparently this is very common with IVIG patients as IVIG is derived from human blood and like a blood transfusion,  can cause these false positives.   Either way,  it is not a show stopper (I still want them to come back negative even if I don’t fully understand what viruses they are. Lol). I now know why the guy who took my blood filled a few more tubes saying “Dr Burt always orders more tests, this way you don’t have to come back” lol.  They also said my NMO came back negative again so we will continue with the MS routine instead of Devics. Kate also called my post-chemo medications into the drug store.  I just need to get extra approval for the Neupogen shots as the few I need cost $2800.00.  So that was exciting call.

Tomorrow I have a goal to leave the room.  I’ve been in here for 2 days.  I am so fatigued and have been battling a bad headache. I have been working this week, but I took vacation for next week when I get chemo and have my baby here.    

So please continue prayers for those tests to come back negative since I don’t need anymore issues, for my mother to get better quickly and for a safe journey for Fran & Rosie!  All your prayers have gotten me this far… I will be forever grateful! 

Xoxo

Colleen

Tomorrow it will be 1 week since we got here.  It feels like so much longer. I think the thought of what is to come has the days dragging on. I’m not scared.  I know that sounds weird, but I’m not.  I know the risks, I know how sick I will be, I know the recovery will be long and hard, but so is MS.  This transplant is something I never thought I would have… Remission.  

Today we headed back to the mall so I could get Rosemary some gloves for when she gets here in a week.   It’s funny how quickly I forgot how much effort it takes to go anywhere in cold weather.   I’ve lived in Texas for 4 years and I can honestly say that I barely wear a coat.  Back in the north, it’s an event to go outside. I feel like that little boy in A Christmas Story every time I step outside… “I can’t get my arms down”.   We stopped at Columbia and they had 4 pair of infant gloves left.  I was finally able to find some at Macy’s.  That Macy’s at the Water Tower Place kills me.  It has 8 floors, it’s an event to find anything… Except gloves for Rosie.  I had to practically drag my mother out with all the sales they had.  We then ate some lunch and headed to Walgreens.  My mother is fighting a cough.  Last night I gave her the humidifier I bought for my room and it seemed to help.  So we went to pick up some cough medicine and another humidifier.  I doubt I will be allowed to bring it to the hospital, but I am going to ask.  It’s hard to breath with all the dry air.  We came back around 2:00 with the intention of going to mass at 5:00.  That isn’t happening today.  I have a headache again and my mother is laying down insisting she is not sick.    She sure sounds sick to me.  I’m hoping the text with the urgent care address will give her the hint to go.  Here she is all bundled up at the airport…. This may have been the last trip.  



Rosie spent the day with our dear friends Vonna and Sean.  It sounds so weird to say friends because they are more like our family.  They have 3 children… all of whom were adopted from China, so when we thow in Miss Vietnam, watch out.  I have never seen kids have a bond like these 4. It really melts your heart.  The best thing is going out together.  People have no idea what is going on and you can see their faces as they try to figure it out.  I call Vonna super mom because she does more in a day then most people do in a month. I briefly facetimed Rosie when she got home and she looked exhausted.  I am sure Nona is appreciative of that.  

We are counting down the sleeps until we are all in Chicago together. 7 sleeps left.  I have to tell you the biggest sign of love I have ever gotten was that Fran is flying to Chicago ALONE (with Rosie, but no one else).  For those of you who know her, that is MASSIVE. When she came with me to Vietnam to pick up Rosemary, there was quite a Fran following on my blog. Carol, if you are following me, we need a twin reunion.    I really don’t know what I would do without Fran or my parents.  Can you imagine having to pick up and stay in Chicago for nearly 2 months without your child? My HSCT family can, but for everyone else, it is harder then you can even think it will be.  I never worry.  Not for one minute.   Fran is for sure the best gift Jason could ever have given me.  

I feel like a wimp, but I am currently hiding in my bedroom because I ordered groceries for the 3rd time this week (and we eat out at least once a day).  I’m trying to avoid my father shaking his head at me lol.  I’m a vegetarian and at least if I cook… I know I will eat it.  There are only so many veggie burgers and pasta dishes a sister can eat.  Tonight I’m making chilli and cornbread (as soon as this pain pill kicks in).  

Well, it looks like my text hint worked.  Marianne and Tom just left for urgent care.  perfect timing as they probably passed the grocery guy on the elevator.  

Please say a prayer that my mother has a non-contagious dry cough and nothing else.  I promise that the blog will be much more exciting when mobilization starts in s little over a week. By the way, for those of you who are wondering, I have cleared Rosie’s visit with Dr Burt.  Although she will be here when I get my chemo, he said my counts shouldn’t drop until the following week.  Her grandfather is going to take her on a date when I am in the hospital.  This way Fran can get in on some of the hospital action.  I know she is thrilled.  Lol

Xoxo

Colleen



I am trying to not exhaust myself with my first chemo dose a week from Monday.  It’s hard because I miss my girl, I’m trying to be productive at work and in typical Colleen fashion, I find strange things to worry about. So, mentally,  I am tired and physically, the MS fatigue has caught up to me.  Never the less, today was a nice day.  I logged onto work about 7:30, got knocked out of the VPN about 10 times and got some long overdue clean up work done.   I have amazing coworkers… Especially Cecilia.  I never have to worry that things may fall apart.  They won’t and she is such a blessing.  

At 1:00, the best part of my day happened.  Rosie was in a fairy tale battle.  Dan and Fran went and facetimed us so we could watch it.  She has been so excited all week for this event.  She and all the kids did not disappoint!





My Asian Cinderella 

In the early evening, my mother and I went to the Elizabeth Arden Red Door Salon.  I wanted a facial, mani and pedi while I was still allowed to get them.  It was nice, but truth be told, I expected more.   It was small, crowded and not the most relaxing spa I have ever been to. The nail ladies were bad mouthing eachother and customers every chance they got.  Thankfully, I got one of the few that didn’t.  Uncool ladies of Red Door,  uncool!

Finally, we finished up with a take out meal from one of our favorite italian restaurants Voltare.  You know the food is good when it comes 45 minutes late (thanks Grub Hub) and is still delious after reheating.   MMMM.   

I even got to FaceTime my girl twice today.  I can’t waIt to see her in 8 days.  I miss her so much.  Well,I’m finally going to sleep now.  I hope you all have an amazing weekend.

Xoxo

Colleen

well,  my UGG hat came in today and to my horror, my monster head is too big for it.  Even when I’m bald,  it will cut off the circulation to my brain. Lol. So, I am sending it back.  Well,  it was nice while it lasted! 



In my defense,  my mother tried it on and either she had a monster head too or it is really small.  Lol

Xoxo

Colleen