what's next?

A month ago today, I was exiting Prentice Women's hospital with my MS turned off and a new immune system taking charge.  It really does seem like my transplant was ages ago, but when I look in the mirror and view my bald head or feel like a senior citizen with my pill organizer...I'm reminded that it wasn't so long ago.

We think I look like the Lorax in this picture...I have to agree!  Thank you Lemmon Family!

 I can't begin to tell you the number of times I've been at my computer and had every intention to post an update, but I got busy with kids (our lab just turned 1), cleaning, laundry, more cirque du soleil tryouts, participating in the world cup, invading a small neighboring country and imposing my will upon them...you get the idea!

Some of you have asked how I'm doing?  What's next?  How do you know if your transplant was successful?  How was the transplant/chemo, REALLY???  What precautions do I still need to take?  I know you've all been waiting with baited breath for my update (note the sarcasm), so I will kindly oblige.

Let's see...I'm doing great...the end.  No, really, I'm feeling extremely well.  I would say shortly after my transplant I felt like 95% of my MS symptoms/disabilities were gone (ringing in my ears, leg weakness/spasticity, debilitating fatigue, headaches, mental fog, just to name a few).  Craig might object to the mental fog subsiding, but I'm 40, blonde, and I've got some lesions in my brain!  For me the increased energy level alone, post transplant, would be worth doing it all over again!  I think my kids are a little shell shocked and frankly somewhat annoyed at my new energy because some of it has involved deep cleaning/organizing several rooms in the house...exactly what every 11 and 8 year old envisioned for their summer activities!  I have a new fatigue at the end of the day, but it's from a well lived and productive day.  I feel so blessed to be able to participate in my kids activities instead of viewing them while supine on the couch or only hearing about them because I didn't have the energy to go.

I made it home for the big dance recital make-up application!

I still experience some numbness and tingling to my left hand and the vision in my right eye is still not what it was prior to MS, but I would say it's better.  Now, when I exercise my vision remains the same, instead of complete blurriness to my right eye, and my left hand tingles instead of completely going numb.  My legs have normal muscle fatigue, but I don't experience muscle spasticity or heaviness at the end of my workout.  Dr. Burt and Amy say that most MS patients see the greatest improvement/decrease in disability score (EDSS) by two years...so I have a long way to go.  I might not ever completely regain my vision or be free of the numbness/tingling in my left hand, due to lesion scaring on my c-spine, but I can live with that.  I'm extremely fortunate my MS was diagnosed early, and I was made aware of HSCT at that moment! A big thank you to Dr. Pfefer!  Yes, I had some "hard" days during the transplant, but I think every MS patient who has gone through HSCT, to stop their MS, would do it all again in a heartbeat!

So the plan for me, post transplant, involves medications, blood work and MRI's.   I'm on a three month course of Diflucan and Bactrim.  These medications help prevent any nasty fungal or bacterial infections, mainly PCP pneumonia.  I will be on a 1 year course of Acyclovir.  This is an anti-viral that helps protect against shingles.  Since my discharge, I've had weekly lab draws to check my blood chemistries.  These have been every week for the last month, every other week for the next 8 weeks, and then monthly for three months.  Makes me sorta miss my PICC line...kinda...not really.  I still need to avoid buffets, sushi, restaurant fruit and veggies, public swimming pools, lakes, rivers, oceans, sick people, denim golf jeans, voldemort...yes, I said voldemort! (Just wanted to see if you were paying attention).  I will require a yearly MRI and follow up with Dr. Burt.  Hopefully my MRI's will be free of any new lesions and I will not experience any new symptoms or relapses.

A week ago we celebrated this great nation's independence.  It was significant for me in many ways.  I reflected on the many freedoms I have and enjoy as an American citizen, and the fact that I was alive to celebrate them.  I also reflected on the freedom that I have gained by stopping my MS.
1.  I'm free of sharps containers! No more painful injections of disease modifying drugs that make you feel "crappy", suppress your immune system, and at best have only a 30% success rate.
2. I'm free of costly, neurology appointments that only offer "new and better drugs" on the horizon.
3. I'm free of thinking and planning (for the last year) how I was going to get HSCT done to stop my MS
4. I'm free to think about the benefits and possibilities that now involve a life with my MS turned off.
5.  I'm free to be the engaged mom and wife I want to be.

These babies are headed for the local pharmacy/medical waste...never to return!

I know I've said it before, but I'm thankful for all the beauty today will hold...and all the great, big beautiful tomorrow's I have yet to experience!

~Veronica

Home again, Home again...jiggety-jig

This post is a few days late, but I was busy loving on my kids and soaking in my non-hospital, country environment.  It's just too good to be home!  I told my mom on the phone the other day that it went faster than I thought, but those last few days were like torture...you could see the end, but you couldn't quite reach it.  I feel a little shellshocked.  This treatment that I'd been seeking, planning and fighting for is complete...now I let my body heal and do what God designed it to do.

I was a little worried I wasn't going to make it home.  Our taxi ride to the airport on Friday was probably the scariest part of this entire process (not really, but you get the idea).  Our taxi driver must have mistaken us for ultimate thrill seekers.  Either that or Craig's forbidden photo op caught up with us and we were wanted fugitives trying to escape Northwestern Hospital, in a TV worthy police chase.  I think I audibly screamed several times, and grabbed Craig's arm more times than I can count.  I felt like telling the driver..."Precious cargo here...I just had a stem cell transplant. I'd like to live to enjoy my new MS free life with my family".  Apparently the Prius is now an option for Nascar.

We made it to the airport intact, but soon realized that as our boarding time approached, our flight would be delayed (for 3 hours). This was "mechanical", so not announced ahead of time. Eventually they got us another plane which may have been a good thing.  I don't know if any of you have flown through Chicago O'hare, but it's one of the world's busiest airports.  Craig and I both agreed that in all our years flying through there, we'd never seen it as busy as it was that Friday!  It was as if the word got out that the token bald lady, with her baby immune system, was at the airport and everyone should please go take a look!  Needless to say, I wore a mask the entire time at the airport and on the flight home.  I got all sorts of looks, but I really couldn't have cared less at that point...I just wanted to go HOME!


It was a sweet (late) reunion, but so precious.  I can't say enough how proud we are of Emma and Luke and how they handled all of this.  They were so excited to see us and even more excited to present to us their research on, "why we should get a guinea pig".  I think we would have agreed to anything, so a guinea pig seemed like we were getting off easy.  I can't be involved in any of the care, keeping or holding of said "pig", but they've demonstrated such responsibility that I know they will do great.  Meet Lula Raymond...she's a sweetheart.

As you can imagine, Father's Day was just a little bit extra special this year.  It had always been my goal to be back for Emma's big, end-of-the-year dance recital on June 19th, but depending on how long it took for me to engraft...Father's day wasn't a given.  Craig is such an amazing dad!  I'm happy that we could be home to celebrate him!

So today I'm thankful for the Father's in my life.  First and foremost, my Heavenly father who has carried me every step of the way during this treatment.  I could write an entire blog detailing all the ways everything that happened to get me to this point was more than just chance, luck or anything I had done on my own.  I'm thankful for Craig.  Emma and Luke are blessed to have such an amazing dad.  His hobby is them...period!  He's always been a "hands on" dad, but even more so after my MS diagnosis and the debilitating fatigue that went with it.  My father-in-law, Dave, who has modeled for both of his sons compassion, love and integrity.  Former-Marine, engineer, handy-man, the list could go on. If you know Chris and Craig, enough said.  Lastly, my own dad.  He's really quite an amazing man...Vietnam vet,  former-Marine (subsequent CLL from exposure to agent orange), mr. fix-it, educator, coach, and quite an equestrian, just to name a few.  We share a love of college sports, anything involving physical exercise, clean organized garages and spaces, and much more that I won't list here.  I never once in my life felt like you were disappointed that you didn't have any boys.  I can remember you (and mom too) at every organized sport/school event I was ever involved in.  You and mom instilled and modeled for me values like integrity, determination, patriotism, respect and the love of family.  I love you with all my heart!  Happy Father's Day!

~Veronica

Day +9...and they come roaring back, day +10...freedom!

Amy, Dr. Burt's nurse practitioner had told us that once you begin to engraft, you're white count comes roaring back.  Mine did not disappoint.  My white blood cell count was .6 and my platelets were 160,000.  So apparently, last night, the first 100 called some friends and had an engraftment party in my hip, knees and low back.  I had some intense bone pain last night, but it was the best feeling knowing that it was for a good cause.  My body was making new white blood cells, pronto!  When Dr. Burt and his team rounded on me this morning, he informed me that they would check a blood count at 2pm today, and if my white count was above 1, and my platelets were still rising...I COULD BE DISCHARGED!

Dr. Burt, Amy (NP) Stem Cell Queen, Dr. I-Forgot-His-Name, Allison (NP)

So, around 2pm my labs were drawn and my white count was 1.8 and platelets were 180,000...and just like that, I was being discharged!  Amy came in to go over discharge instructions (stop eating sushi, don't lick doorknobs, avoid sick people).  It was fitting because the fabulous nurse, Anne, who checked me in on my first day (May 28th) was also the nurse to take care of me on my last (June 11th).  As it turns out, it was her last day too, she's moving back to Michigan tomorrow! The last thing I parted with was my PICC line.  It was good to have my right arm free of that jewelry...it was such a lifesaver for me these past few weeks.  We packed up, and I said goodbye to some of the best nurses and staff on the 16th floor of Prentice Women's Hospital.

I took a  picture of Craig from my 16th floor window on his way to buy "bye-bye bagels" for the nurses

Goodbye room 1690!

It was a little surreal walking out of those double doors for the first time in two weeks.  On one hand you're beyond thrilled, but on the other, it's a little terrifying leaving this floor where the staff take every precaution to avoid infection.  Depending on your infection risk, new gloves, gown and mask are worn every time a nurse/physician/tech enters the room, the air is specially filtered, your food is specially cooked, you're required to wear protective clothing when walking the hall...it really is your little bubble. So I left this bubble, with nothing but a suitcase, a bald head, 1800 white blood cells, a headache, and a husband who was clearing the way.  Thankfully, he chose not to take the 16 flights of stairs down, and we did resist the urge to get one last photo in the Prentice lobby with our favorite security guard.

We had a short walk to our apartment, and I took in the not-so-fresh, big, city air (it was glorious), felt the cool breeze on my face, smelled the beautiful flowers blooming in the park, observed several dogs being walked (I had to resist my urge to pet them), saw an ongoing tennis match and heard some elementary kids having P.E. in the open field.  I simply took a moment to enjoy the hustle and bustle of humanity in this world famous city.  It was a good day to be alive!

Now, we pack up the apartment, get my medical records in order, catch up on some sleep in a regular bed, make sure my body doesn't reject my new, non-hospital environment, have a celebratory dinner and then fly home Friday afternoon!  Phase 4- Transplant is complete!


Today, I'm thankful to be walking out of the hospital on my own two feet, with my MS turned off! Wow!



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I think the lack of sleep and the stress this entire process puts on your body finally caught up with me.  I found myself in bed at 7:30pm.  Craig mentioned something about finally buying that Ferrari and the 38 million dollar penthouse at the Trump, but when I awoke this morning I didn't have a message from the bank informing me of my gross overdraft, so he must have just gone for a walk instead.  Thank goodness!  Maybe he used the corporate card!  Thanks ESO!

Near the water not in it...that's a no-no!

We ran a few errands and I took a stroll outside.  It's a beautiful Chicago day and I wanted to enjoy my new found freedom.  We did our old walk along the river and I found myself needing to take frequent breaks at the benches.  Amy told me that for the next few weeks I would probably be pretty fatigued (who knew), and I can see what she means now.  I'm glad that when we return home tomorrow, we have some time to rest, recoup, regroup and relax.   Craig doesn't have to return to work for a bit, which is great (thanks partners) as I will be fatigued and start outpatient meds and need labs, etc. We have a lab puppy and two kids on summer break, enough said.  I can't wait to love on my kids and love on them again, and then some more after that.  It's time to heal...let's get started!

Today I'm thankful for a good nights sleep in a very comfortable bed, sans the 2am lab draw and vital signs!  Maybe I'll be crazy and stay up till 8pm tonight!  

~Veronica

Day +8- so great...engraftment begins

Because I'm neutropenic, my vital signs must be taken every 4 hours to make sure everything is OK and I haven't spiked a fever.  So at 2 am, the nurses kindly combine obtaining vital signs with my morning lab draw to check a complete blood count and chemistry panel.  When she came in later to give me my morning meds, she also told me my lab results.  She uttered 5 beautiful words..."You have a white count!". Craig noted, incidentally, that "You-won-the-Illinois-lottery" and "You-may-go-home-today", would have also been 5 beautiful words, but I'll take the white cells at this point.  She said it was one of the perks of being a night shift nurse, getting to tell a patient that he/she has started to engraft.  CUE the waterworks! It's day +8 here, and engraftment normally happens between days 10-14.  Today my little, tiny, white count is 0.1, up from a whopping 0.0!  Normal would be anywhere from 4000-12000 and mine was unmeasurable  yesterday and today it is 100. My platelets bumped up more than my white cell count and are now at 96,000.  (I think I might just join the .1% club that won't need to be transfused).  Dr. Burt seemed to be more excited about my platelet count in terms of engraftment.  I guess 10% of patients bump their platelets first when they engraft, and the other 90% bump their white count.  He didn't commit to any discharge day, but we know it is just around the corner.  It looks like Craig might have a very Happy Father's Day!

Did I mention my maiden name is Thunder?

The nurses have called me an anomaly. I feel fortunate in that I'm one of the fastest patients they have seen engraft and I haven't needed any blood products. My secret is that I walk an insane amount of laps, I eat an insane amount of hardboiled eggs, and my husband provides daily support and comic relief.  Most importantly, I have a legion of people praying for me and I know God is in control of this "anomaly".  I feel lucky because I require minimal nursing work...maybe I can do this again! The nurses and staff here have been great. On this floor, like on so many others, I know there are patients far worse off than I am. They keep telling me that they are going to take my picture and put it on their wall of fame. We plan to submit the photo below.

In the words of King Julian, "this lady is really starting to freak me out!"

I have experienced perhaps my first ever "migraine" the last few days (can be a side effect of the neupogen). Unfortunately, the "music" lately has not been soothing violin but rather some hard rock band apparently called "Construction Zone", directly beneath my room. No lead guitar, just a drill into the steel girder. I sure will miss those guys.

Today I am thankful for 100 little white blood cells that stood up and demanded to be counted. Hopefully they will be joined by hundreds more tomorrow.

~Veronica

Day 5 and 6

It feels a little like the movie Groundhog's Day around here...you wake up and it's the same thing... same lab draws, same antibiotics, same morning meds, same room, same walks...you get the idea. Thank you all for praying...I have had an uneventful course so far and I'm perfectly happy with boring and mundane when it comes to my hospital stay! Besides, Craig is entertaining.  My WBC's are holding steady at (nothing)<0.1,  and my platelets have dropped a little more and are at 75,000.  They won't transfuse until below 30,000, so maybe, just maybe, I'll be one of those (.1%) that don't need any transfusions at all.  Wouldn't that be fantastic. I had a mental lapse the other day and asked Craig to bring me a razor so I could shave my legs. His response had some words that may have been German or had some harsh consonants but ended with a definite "no".  It's kind of given me a little friendly competition with myself and my platelets.  If they ask me how I did it I would say that I've really tried to maintain a high protein diet here.  I have hard boiled eggs with almost every meal, so much so that the nice lady who brought my tray last night thought she had my order wrong. I'm not sure that English was her first language and Craig had a whole Saturday Night Live skit in the works but I'll leave that...Yes, I'm the crazy chemo gal who eats lots of hard boiled eggs. Walk, walk, walk...

The amazing Dr. Burt. They say he is going to win the Nobel prize...I know he will!

Speaking of my food being delivered...I have a dining-on-call friend...Craig knows about him.  His name is Juan.  Patients here order their meals by phone.  The dining-on-call operator tells you about specials, the afternoon smoothie selection, and takes your order.   I secretly hope that when I place my call, the beloved Juan (with his Barry White like voice) will answer when I ring for eggs! Even the nurses know about this guy's soothing, debonair voice.  He needs a radio show.  He never judges me, but accepts me for who I am... a bald, neutropenic woman who has a insatiable appetite for eggs!  I told him he was being mentioned in my blog today.  I know he was flattered...

Tell me about the hard boiled eggs, Juan!

Getting some continuing ed done

Yesterday, as I was sitting in my chair, I started to hear some lovely violin music being played.  The nurse told me that they have volunteers come in once a week. They stand outside by the nurses station and play for those patients who wish to open their doors and listen!  I was one for sure!  For a few moments, I felt so normal and was blessed by this beautiful, impromptu concert. Disney, classical, Cold Play...he was great. This is an emotional roller coaster with the meds, missing the kids, all of it...so, yes, I lost it when he played "When You Wish Upon A Star".  You all know that, for me, it's not about wishes and it's not about stars, but God, guiding me to this moment, opening doors for this treatment.  It was too perfect!


Today I'm thankful for socks. Weird, I know.  I think I mentioned in an earlier blog post that my very cool sister-in-law Rita sent me some socks.  Not just any socks...these socks are daily affirmation socks!  They tell me:  I'm Blessed, I'm Strong and I'm Awesome.  So I need look no further than my feet for a little motivation and a little hug!  I think I'm engrafting already!  Thank you Rita, and to all of you who bless me with your prayers, keep me strong with your words of encouragement and make me feel awesome by knowing your cheering me on from all different parts of the world.  I wish I could send you all a pair!

~Veronica

Day +4

Day + 4...Guest author today as Veronica gave me some silly excuse about being tired or weak or something.  Anyway, it's day +4 and she's still without a fever and achieved a new mark today of having an absolute neutrophil count that was too low to register.  Absolute neutrophil count, bank account, compassion account, forgiveness account...all  accounts in life that would be nice to not have at "too low to register".   So far she is not badly anemic (her hemoglobin/hematocrit are at 9/28 with normal for her, say12/35), and for you medical folks her platelet count is still above 100,000.  We received fair warning that she may need to be transfused at some point...we'll see. Basically she is kicking butt and I couldn't be prouder.

Today was a tough day in that it was the awards ceremony for our kids at the end of the school year...but we were with them in spirit. They had a great year...again.  We are proud parents! My folks would come to the Juvenile Detention Facility every year for my brother and I also...just kidding.  I was never caught.

first day of school 2013

We have also been missing our beloved lab puppy and hope to be home for his one year birthday on June 23rd.   I was reminded of Hick the other day when I met my mom at the famous Chicago Union Station as she was coming in from Michigan. Yes, I walked and she did also on the way home...her choice, go Mom.  Anyway, when I arrived and went down into the main area I noticed police everywhere. Then I saw a Labrador Police dog and let's just say he was not at all calm and serious like most police dogs.  He was acting like Hick when Brian comes over.  Then, the dog "locks on" to a guy with a red jacket and a backpack.  I'm about to take cover (they are bomb sniffing dogs not just drugs) when the cop handling him smiles and throws a tennis ball at the back pack...training exercise.  Happy lab with a tennis ball. My mom's train was already late and a bomb would have really messed things up.  If that guy had bomb residue on his ears, Hick would have had him cold.

                                      Hickory is a great hugger

Today's photo is of Veronica wearing some new scarves that are temporarily adorned with jewelry.  I caught her at the computer trying to somehow adjust her lab values. She has found baldness to be somewhat less than liberating in that lots of fabrics, etc. apparently irritate the chemo-dome.  There is a product out there called "Anti-Monkey Butt Cream" but she has declined.

So I went out to get her some scarves...they were all adorned with jewels for some reason, but at least they were the right fabric.  For those of you who know Chicago and the Magnificent Mile...I was at Marshall's, not Burberry or Saks or Armani or Zara.  No Kate Spade, whoever that is.  As I round the corner off Ontario onto Michigan Ave with my jeweled scarves (got some funny looks getting those, Duncan suggested I stop wearing high heels)  I stop in front of the Cartier store.  Side bar...Wrigley Field, where the Cubs play, is 100 years old and to help celebrate the city has placed pairs of stadium seats all over, decorated with all sorts of  painted stuff like hot dogs, pictures of famous players, etc.  Stay with me...my dad was an engineer and spent his career with American Seating Company and he was involved with stadium seating all over the place. The two seats on the corner of Ontario and Michigan Ave are not only American Seating Company Seats, but the one I sit in is painted "End Multiple Sclerosis".  As I sit, I am looking at "real jewels" in the windows of Cartier, any number of which costs more than, say, a stem cell transplant.

The opportunity to have my wife and mother of my children get treated, the vision of Dr Burt and his team, the kindness and support shown to me and mine by our families, our friends, my co-workers...there's nothing in that window to compare.  That's what I'm thankful for...

~Craig

Day +2 and +3

Not a lot of news to report here...still neutropenic, still bald and still at Prentice Women's Hospital!  Today's photo of my room is my closet...it seems to be a good, safe place to hide out from my white blood cells. They all went somewhere as my white cell count is 0.1.  Maybe if we play hide and seek they will come back faster.  I'm willing to try anything at this point.  My platelets are hanging in there so far...tough little platelets.

 Craig's mom, Judy, took the train down from Grand Rapids to pay us a visit.  It's always good to see her and I know they enjoyed hanging out in the city!  The apple doesn't fall far from the tree as Judy will keep pace with Craig!  If need be, you're never to old to need a piggy back ride from your mom.  

I think they are going to go check out the top of the Hancock for Tilt and then hit the Navy Pier's stained glass art museum.  www.360chicago.com/tilt/

I had more energy yesterday so I decided to try out the exercise bike in the lounge.  I used to be quite the spinner before MS.  I quickly realized the error of my ways since I'm not trying to make weight for a wrestling match. The plastic gown, glove, mask combo made it feel like a hot yoga/spin class combo...no bueno...so I'm back to walking.  My first clue should have been that we've never seen anyone else trying it. The nurses told me I get the "best walker award".  I strive for greatness!  Let's hope I get the fastest engraftment award as well!

Today, I'm thankful for a mother-in-law (and father-in-law too) who raised a son that loves his wife in all her neutropenic baldness, drug induced babblings, and all other forms of chemo unloveliness.   Both of our parents are still together after all these years.  A true testament of marriage vows in action...for richer or poorer, in sickness and in health.  (I think my transplant qualifies as both of those!) I hope we are serving as a good role model for Emma and Luke since we both have had such great examples to follow.

~Veronica

The quilt Judy made for me

Day +1

Day + 1 they say is the worst, and thus far that seems to be accurate. It's not pain...hard to describe other than generalized "crummy-ness".  Craig and I have already walked twice today which seems to help. Mornings tend to be the toughest.  My white blood cell count is at 0.6...so is my absolute neutrophil count at 0.6.  Depending on the definition one wishes to use, neutropenia can be below 1000 or below 500. So my count at 600 is low enough that Craig has to stop bringing me fresh fish from Lake Michigan. There is a "farmer's market" on Tuesday at the Museum of Contemporary Art and I have to pass on the jars of honey, etc.  All joking aside, we have entered the "danger zone" so no fresh fruit, flowers, etc.  I will likely get a fever from the rabbit ATG (can happen several days out).  Visitors are required to wear masks now if they are not feeling well...but I get to wear one on our walks once I am below 500.  I see some fun mustache stickers on those!

My favorite respite is my morning shower and it always makes me feel better so that's the room photo for today. I think I could stay in there all day. It's bigger than the apartment.

The MS and CIDP (chronic inflammatory demyelinating poly-neuropathy) patients are connected if they choose to be via Facebook groups due to folks like and George Goss and Barb Coppins!  They provide a wealth of information to those interested in HSCT. So today we get a knock on the door and in walks Wendy...who I "know" from the sites as mentioned above. She is from Florida and back for her follow up appointment.  She looks great, and was just visiting nurses and offering words of encouragement to folks right now.  It's nice to be able to see the long term success of this treatment right before your eyes.

So on what started out as a potentially "bummer" of a day deserved some positive pictures...one is the cool park/lounge on the 11th floor of the children's hospital. That's not public and even Craig doesn't go over there (lobby photography is one thing, sick kids is another)...the nurses on our floor don't go there either.  We have learned that they have play areas and all sorts of "nooks and crannies" for kids and families.  Apparently when the window washers have to do their thing they wear superhero costumes. Way to go window washers and Northwestern.   I hope to spot some in action...I think that is just too cool!

The other picture is out the lounge on my floor and you can see Lake Shore Park.  They play 

Chicago softball there, which Craig tells me is Mush ball (16 inch and softer) and they don't use gloves.  Apparently this more closely resembles the original game and is almost exclusively played in Chicago...except for (drum roll) Portland, Oregon. (Maybe it's easier to see and hurts less after
you've been to the microbreweries.) I can also see dogs playing in the park. All in all, not a bad prison.  I'm thankful that my immune system (or lack thereof) is safe here!

~Veronica

Northwestern Medical School 

T minus one and Day 0

This is a day late, but I got a little tired after my cirque du soleil auditions yesterday in the room.   I didn't get a call back...not enough hair to swing from...the nerve!

Stem Cell infusion tomorrow at 10am!  Yipee! So Thankful Chemo is done!  It's my stem cell birthday tomorrow!

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Well, the lab showed up at 10 am with my my cryo-frozen stem cells!  It was like a mad science experiment with the dry ice bubbling out.  The cells are defrosted right in the room and need to be infused within 30 minutes to prevent them from dying.  Truly amazing!

They started the infusion and everything went off without a hitch.  I got a little bit of a weird taste in my mouth and experienced some flushing to my face, but all normal reactions and I felt fine.  I feel great now too...no nausea, no heaviness in my chest!  Thank you for your prayers!

My little bag of 16.8 million stem cells only took about 20 minutes to infuse...so anti-climactic!

Just to lighten the mood, I brought out my Veronica Viking Hat!

All done and ready for a walk!  Day 0 Done!  Now my stem cells find their way home and start rebuilding my  new immune system.  I'm waiting for engraftment which should be anytime between day 10-14.   I will keep you all posted on my progress.  Please continue to pray that I would avoid fevers, infections and general nastiness.  I'm about to be at my most vulnerable time (immune system tanking).   

 I'm thankful for a great, big, beautiful today and all the great, big, beautiful tomorrows!  Don't waste a single moment!

~Veronica

T minus 2

Well today I received my last infusion of cytoxin.  I will be happy to be done with this poison as it was really cramping my style this morning...the nausea was through the roof, but the fantastic nurses here are on top of it and I'm feeling much better and have even gone out for my leisurely stroll. Had to skip the weights and the lunges. Good days, bad days.  Craig and I walked this morning during "rounds" and he wanted to help out some poor resident getting grilled but I made him keep going... I don't mean to make light of this situation...this is a big deal, but it helps to find the humor when you can.  Craig and I were "joking" with some frighteningly young guy in the hall this morning....he's a patient and we are on the oncology ward. So you can try to laugh, or you can cry. Another helicopter landed on top of the Children's Hospital today....That's why I post some funny pictures.

 I've been living on jamba juice, thanks Mom and Dad..Craig says the folks that work there are starting to wonder about him...time for a mustache.

Craig has been out and about with Dr. Brian Duncan showing him the sights of Chicago.  I hope he brought his urban hiking shoes because I think Craig has an Amazing Race Episode planned for him. It's been a much needed mental health break for Craig, better than staring at your nauseous wife!  We've been busy playing science hangman and guessing edible gummy injuries! I'm sure one of these is an MS brain lesion (too funny).  I think I like the blown pupil the best...that's never good. Thanks Maura!   They brought me another care package from the ER that had some yummy treats and some funny items you'll see in the pictures below.  Thank you Denise, Leah, Julia, Jaime, Andrea, Kathy, Allie and all of you in the ER...so fun! I get lots of meds so sorry if I forgot anyone. Our kids got another package from the hospital administration back home....they love it and we are grateful.

To clarify, these photos are in the morning

Tomorrow, I will get my last infusion of the rATG and Monday, at 10am, will be my stem cell infusion...day zero.  I'm slowly making my way through this journey.  This morning was hard and I suddenly missed my kids terribly thinking about how much longer I would be here....baby steps...one day at a time.

Today I'm thankful that Craig has a good friend like Brian to help take his mind off of things here. Still, they've hung out with me twice today and brought me a smoothie. I'm thankful that my God is ever present in times of trouble and I know He has me right in this place for this specific reason.  The Lord is my Shepherd!

~Veronica

T minus 3

Today was day -3 and one day closer to the finish line.  I'm having a bit more nausea and general fatigue, but it's also hard to sleep in the hospital and all the meds sort of throw off your circadian rhythm.  My white blood cell count and glucose are both elevated due to the steroids but at least that means I'm not yet neutropenic.  My potassium was low so they supplement me and I continue to enjoy the side effects of lasix, a diuretic. Yeah...that stuff is super fun, especially the 10pm dose. That's just wrong.

I wanted to include some pictures for friends and family so they know where we are and what we're doing. The laps on this floor are unfortunately shorter than during my last admission so Craig and I are learning the pictures on the walls fairly well.

          Same chemo...different day! You, too, can blog and order hospital food

We discovered a version of Jenga in the lounge so I let him beat me and we also found a child's toy that shoots soft foam disks...I lost that game, also. To his credit, Craig can shoot...but let's face it, I'm towing a four-bagger IV pole with enough stuff attached to look like C3PO is my date AND I'm in a blue plastic gown. That's a "target rich environment"...so I'm told.

I use some hands weights while walking and there's some steps I can climb and I try to do "lunges" down one hallway....a nice housekeeper today asked Craig if he was a "personal trainer".  No, ma'am, he's the Energizer Bunny.  He went out to get me some outside food and on the way back up he saw a doctor he recognized from when we were walking this morning...so he held the elevator and pushed the correct floor without being asked. By way of explanation, Craig told the guy he recognized him from earlier so he knew where he was going....it's that global awareness thing. The guy turned  and said "so how's it going up there, you guys knocking down walls and stuff? ".  Yep, he thought he was a construction guy on the 15 the floor.   Personal trainer, construction guy...both steps up from illegal photographer. Making progress!

Thanks for all the support and for helping spread the word about HSCT for MS.

Today I'm thankful for the staff on the 16 floor of Prentice Women's Hospital.  They have all been so kind, helpful and compassionate.  I feel so fortunate to be here getting this treatment.  I am blessed!

~Veronica

The Countdown

Around here they call yesterday T minus 5.  I've had lots of meds (and let's not forget the lesions in my brain), but I think that makes today T minus four.  We are on the countdown to my stem cell infusion on day 0.  We shall commemorate each day with a different photo of me in my new home. Yes, we are taking photos...No, none will involve speedos.  I have a beautiful room on the 16th floor with another spectacular view of the Northwestern campus.  We are on the 16th floor because they are currently remodeling the 15th floor, and I'm not sure all this noise qualifies as Chicago jazz! Maybe they are filming another Batman movie down there...

                                                       T- minus 5

I received several pre-chemo cocktails...sounds much more glamorous than it was.  I was given my first of four doses of Cytoxan, followed by my first of five doses of rATG (here they just call it rabbit).  I'm still receiving 24 hour infusions of Mesna (to prevent the bladder irritation from Cytoxan) and many doses of Lasix...oh joy!  Not a lot of sleep around here, but I did see the inside of my bathroom quite a bit (it's bigger than the one in our apartment).  Hey, it beats a urinary catheter any day!

T-minus 5 and a little loopy from the pre-chemo pharmaceutical cocktails

So today (-4) will be a repeat of yesterday.  Same cocktails same chemo...you get the idea.  Amy (Dr. Burt's fabulous Nurse Practitioner) told me that patients usually feel the worst on day 0 (transplant day) and day +1.  It definitely helps knowing what to expect in the days ahead.  Today, I'm a little tired and queazy, but very manageable.  I've already showered and figured out how to change clothes while being hooked to a four pump IV pole.  I also went out on my own urban, 16th floor, chemo hike that was radically different than Michigan Avenue.  Hopefully, however, this will be my Magnificent Mile.  Craig was so proud.  I was wearing a blue bandana...I hope I don't start a chemo floor war with some red bandana folks. My room is on the south wing...south side strong side! I have a syringe full of air and I won't be afraid to use it in your PICC line!! Hey, man, what's your white count??? You think you've got enough platelets to tangle with me?? Ativan for everyone...

Craig thought Trump Tower coming out of my head was a nice touch

Today I'm thankful for my beautiful sister, Jennifer!   She is constantly sending me funny and inspiring texts, along with beautiful pictures and words of encouragement.  I feel the love!  I'm blessed to have you as my cuppy-cake, gum drop, schnookum-shpookum, sister!  She is a computer genius and is a big reason this blog looks and functions as good as it does.  I love you so and I want you to know that I'll always be right here!  Offeffer, (that's what I called her when I was little), you're the best sister ever!  I look forward to celebrating with you and Sean soon!

        Chicago 2013 for my initial evaluation with Dr. Burt

~Veronica

The Yetti and Spaghetti

This morning Craig yelled that he thought he saw a Yetti in our bathroom trash.  I assured him that it was just the excessive amount of hair I had been losing.  His distressed look made me realize it was time to shave what remaining hair I had left. There is no infomercial snake-drain contraption that would be able to unclog our tub and sink without calling the Chicago sanitation department.  Craig's first attempt involved some type of pocket tool that ended up with something on the end resembling one of Monet's Haystacks!  He quickly looked in his phone contacts for anyone he knew in Illinois that might do sheep shearing.  

So we started our day, like many with Craig, out and about on an infamous urban hike.  I was happy to oblige this time as it will be better than hallway laps.  Given the recent Memorial Day, we wound our way around the river walk and visited the Vietnam Memorial, paying homage to my dad!  Love you Dad!  This was followed by the French Market (who knew) and some delightful gluten free crepes and macaroons!  We rounded out the walk with a brief visit to House of Blues and then found a Supercuts off the Magnificent Mile.  As I was sitting in the refreshing air conditioning trying to count the number of people who would witness the shearing, I began to get a little nervous.  Craig being Craig said, "Just a minute" and went out with his phone in hand.  He motioned for me to join him and I found myself half a block away in a small quiet salon with a wonderful Polish lady named Anna.  She cleared a spot for me immediately, shaved my head and didn't want to charge us.  We left a generous tip under her clippers...after all, it takes a lot of effort to shear this sheep.   We hope she has a strong vacuum!  Craig offered to shave his head with me, but I told him not to as I thought it might freak the kids out.  Especially Hickory.  People are already looking at me differently, so instead, he has volunteered to parade around the hospital in nothing but a patriotic speedo and cowboy boots...I think we've already had enough trouble with hospital security!

Then it was time to head to my PICC (Peripherally Inserted Central Catheter) line placement appointment.  Once again I found myself in interventional radiology with someone giving me a shot of lidocaine and saying, "You're going to feel a lot of pressure!".  They weren't lying!  WHOOO DOGGIE!  It's always comforting when the doctor comes in and looks like he's 14!  Does your mom know where you are?  Aren't their child labor laws in Illinois? Seriously?  I'm now a proud owner of a triple lumen IV to my upper right arm.  He described it as a long spaghetti noodle...I beg to differ.  This will really be my best friend in the coming days, as it will save me multiple IV sticks.

Tomorrow I check in to the hospital at 7:30am (no photos please,especially involving speedos) to begin this final phase of my treatment.  I will start five days of two different types of chemo and I'm scheduled to receive my stem cells (all 16.8 million of them) on June 2nd.  This is my "new" birthday.  Please pray that I will continue to avoid infections, complications, and that the nausea would be tolerable.

Today I'm thankful that hair is just hair and for a nice Polish lady named Anna, who made this day a little sweeter like lemonade and not sour like lemons.   (No offense to the wonderful LEMMON family!)  I'm thankful for all the current and former veterans who make my freedom possible!

Thank you all for your continued support and keeping up with my blog.

~Veronica