Three, Clear and Zero

The old adage that, "no news is good news" is certainly true for me. It's been too long since I updated my blog and I felt like my THREE year post transplant trip to Northwestern was as good a time as any to share the great news that my MRI (brain and c-spine) scans continue to be CLEAR and show no new or enhancing lesions and my old lesions are repairing themselves. Dr. Balabanov (my neurologist and MS specialist) rated my EDSS (disability score) at ZERO. For those that don't recall, before transplant I was a 2.5-3. My three year MRI looks even better than last year and Dr. B thinks my body will continue to repair the old lesions in the next several years almost to the point that my MS would be undetectable on MRI. Truly a miracle! I can't stress enough that no other MS drug/treatment does this. No other treatment repairs brain or c-spine lesions and decreases a disability score. Dr. B believes that this treatment is most effective for patients less than 50 years of age and less than 10 years of disease. 

So, while some of you ventured to sunny, tropical destinations; we made our yearly trek to chilly, rainy Chicago...but it did not disappoint. This bustling city has become near and dear to my heart for so many reasons. We were more than happy to mix some "business" with pleasure and enjoy a Raymond family reunion to boot. We have some traditions that are non-negotiable...mainly, the best, deep dish pizza from Giordano's (yes, we've tried them all), delicious, authentic Italian food from Volare, and a cupcake from the ATM at Sprinkles. Don't worry, not all of our traditions are food based. We always have to visit the bean, experience the Navy Pier, visit all of our favorite stores on Michigan Avenue and stroll along the lake front, just to name a few. We usually average close to 8 miles a day of walking.

We did see and experience some new attractions too. The kids finally got to enjoy the famous Shedd aquarium. We braved the line, with Grandma Judy in tow, and saw some really great marine life. We also learned some new, interesting facts at the Money Museum at the Federal Reserve-best of all...it's free. Our friend, Anna told us about the Macy's flower show and it was stunning...the only thing that would have made it better would be to have been holding baby Nolan too. 

I'm quoting from my friend, Christina's recent FB post because she said it so well..."As I reflect on the past few days and consider all that these past years have brought, some highs and some lows. I'm reminded that every single day is a gift...the good, bad, vacation or not. God is good! He's in control and I'm speechless at His love for us." I couldn't agree more Christina. I'm truly thankful for the gift of this journey. See you next year, Chicago!

One year...No Fear!

I have been trying to write something insanely funny, witty or sentimental for this one year post, but nothing was forming in my mind.  I just realized that the first three words written on my one year MRI summary report were amazing enough, all on their own. My post transplant MRI showed, drumroll please... no new lesions, no enhancing lesions and Dr. Balabanov stated that some of my old lesions were smaller!!!!   My EDSS score, or disability rating was a 2.5-3 pre transplant.  Post transplant my EDSS score is 2.   Dr. Balabanov said that the 2 was an over estimate, but the lasting visual changes to my right eye from my optic neuritis put me at a 2.  No other MS treatment or drug lowers a patients disability score. We had prepared ourselves for anything, knowing that God was in control, but we are thankful to be celebrating this news!

It was great to be back in the city of Chicago, especially knowing that I wouldn't be spending the night in a hospital.  The kids got to experience all of our favorite things to see and do in Chicago.  

Let's start first with a forbidden picture.  Yes, Craig saw his favorite security guard.  No, she obviously wasn't on duty this day!

Enjoying some fountain time...it was hot!

Some yummy sweets from the Sprinkles cupcake ATM!

Nothing like the view from the Sky deck of the Sears tower...103rd floor!

Today, I'm thankful for this year!  

-It has been a year without MS medicine or prednisone infusions from a flair.

-A year of renewed strength and energy.

-A year of amazing hope and trust in this treatment

-A year of living the active and involved life I want.

-A year feeling infinitely blessed to have been able to find out about this treatment and have it completed.

See you next year!

~Veronica

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