I choose lemonade

Three, Clear and Zero

2017-04-02T17:05:00.000-07:00

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!

2015-06-13T09:08:00.000-07:00

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?

2014-07-11T15:17:00.000-07:00

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

2014-06-16T10:41:00.001-07:00

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!

2014-06-12T15:42:00.001-07:00

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

2014-06-10T16:52:00.002-07:00

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

2014-06-08T18:01:00.000-07:00

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

2014-06-06T14:40:00.001-07:00

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

2014-06-05T11:50:00.000-07:00

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

2014-06-03T15:07:00.000-07:00

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

2014-06-02T13:36:00.001-07:00

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!

___________________________________________________________

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

2014-05-31T17:47:00.000-07:00

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

2014-05-30T14:03:00.000-07:00

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

2014-05-29T09:41:00.000-07:00

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

2014-05-27T14:59:00.001-07:00

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

Home...

2014-05-21T19:46:00.000-07:00

Just what the doctor ordered...

Hickory is one happy puppy!

My hair has started to fall out...nothing major, but more than normal when I brush or run my fingers through it. Most of you know I have enough hair for the entire population and the generation after that, so this could take awhile. I've chosen not to shave it yet because I've been able to go this long feeling normal. I'll make sure and post pictures of the baldness when it comes!

Today I'm thankful for these precious moments with family, listening to Emma and Luke giggle on the trampoline is music to my ears. I'm thankful for these beautiful, warm, sunny and picturesque Oregon days we've been having! They will be a balm to my soul as I enter the next long hospital stay!

~Veronica

Yes please! May I have another!

2014-05-15T16:21:00.001-07:00

Yes please! May I have another...said no one ever after getting a vas cath placed in their neck. It's not so much the insertion as it is the fact that they leave this big drinking straw in place...then the lidocaine wears off. It all went really well, it's the anticipation that gets you. At 10:45 am the magical machine was spinning at 3000 RPMs and we were anxiously watching the bag that would fill with my stem cells.

My blood counts were good this morning to include platelets above 300,000 and my white count was above 8000, so they estimated we would get 10 million stem cells- though the target was 2 million. As I write this, my follow up platelet count was still good at 180,000 and we are waiting for the blood bank to get the final stem cell count. If it's at the magic 2 million then Capt. Ahab can pull this harpoon out of my neck. Craig and I have visions of some poor med student or lab assistant leaning over a microscope and saying, " 335, 336, ...wait, where was I? Darn...Okay, one, two...". I'm just happy to be out of that little room and I was afraid to drink liquids all day because I couldn't leave my magic machine so you can imagine what that means...

Craig was trying to break out the Will Ferrell cheerleader character from Saturday Night Live with catchy cheers like, "In the morning my breath smells, now come on and gimme lots of stem cells !". Then he took the photos you see so security escorted him to Lower Wacker Drive and I haven't seen him since. I think the Billy Goat "cheeseburger-cheeseburger " place is down there so he's probably all right. No, seriously, he heard my discharge instructions that stated: "no excessive walking!" Whew!! On Mother' s Day he walked to Cook County Hospital just so he could call his mom from where he used to live...last time we went there we took a bus AND a train. Not normal.

My home for roughly 6 hours

Stem Cell Count in: 16.8 million!!!

So we have completed the testing phase, mobilization phase, and now completed the harvest phase. This should clear us for a quick trip home so we can love on our kids! I CAN'T WAIT!

Today, I'm thankful for 16.8 million little stem cells that will come to my rescue after transplant. We have an awesome Creator! I'm so thankful that I'm that much closer to turning my MS off, and I'm thankful that for a few days I can be a mom again!!!!

~Veronica

WBC-11.2

2014-05-12T17:55:00.002-07:00

11.2...That's the title today, you know like those people that have "26.2 " stickers on their car for marathons. According to my team, my white count today was 11.2, which is great in that I'm not neutropenic and the neupogen seems to be boosting my count. Incidentally, if you try to enter neupogen on the iPad the auto correct puts in "new pigeon". Anyway, I could get bombed by a new pigeon and be okay. Bring it on, nasty bird.

I got my labs drawn today on the 18th floor and suspect we were probably above quite a few pigeons. That particular pavilion of the Northwestern complex has at least 21 floors. The sister complex appears to have at least as many floors and there's a separate Prentice Women's Hospital next to the Children's Hospital. There's a building here bigger than both Tuality and Newberg Hospital combined, and it is apparently entirely devoted to medical research. There are so many ambulances on the streets around here that Craig is suffering from PTSD at the sound of them. So far none of them are Metro West rigs.

Craig and I met at Naval Medical Center San Diego and it is a large complex that includes a multitude of specialties, but even it pales in comparison to Northwestern. Since our training days in San Diego we've always either been stationed at, or subsequently in civilian life, associated with community hospitals. As with all things in life, there are pros and cons, particularly for the Emergency Room Department. In a community hospital you tend to have limited resources and there are no sepsis teams, airway teams, etc. Craig always says, "There's a sense of camaraderie and you really get to know the people you work with and they get to know you". They depend on one another. Different hospitals, each providing a vital service to the community and intersecting our lives in ways we never imagined.

So today I'm thankful for large medical institutions where there are people like Dr. Burt and his team, who dedicate their lives to research and pioneering new therapies. I'm also thankful for a small community hospital in Newberg that has made me a part of their family. I am moved and forever grateful for the affection and support shown to us by the people who work with Craig to include; his partners, all the nurses and Emergency Department staff, as well as the hospital administration. At this rate my kids will want me to have another stem cell transplant next year!

~Veronica

Next phase...neupogen

2014-05-10T10:36:00.001-07:00

Just a quick update to let you all know that I'm feeling good and most of the nausea has passed. Today I started my first of six neupogen injections. The neupogen tells my body to start producing white blood cells-PRONTO! I also started Cipro and Diflucan, two antibiotics that will hopefully build a firewall for my upcoming plunge into neutropenia. I'm trying not to be a germa-phobe, but it's difficult to not view everyone and everything as a potential pathogen. I think Craig would draw the line if I asked him to don a hazmat suit while being in my presence...I'm sure they sell them on amazon.

This seems to be a safe distance to converse and do business with one's mate!

My blood test on Monday will show how far my counts have dropped. I feel like I can hear my immune system chanting the limbo phrase, "How low can you go?", "How low can you go?". Dr. Burt and his team tell me that after bottoming out on Monday my immune system, with the help of the neupogen, will come roaring back so that on Thursday I will be ready for the harvest phase of this process. I know you're all waiting with baited breath! So Craig and I continue to wait and I will resist the urge to lick door handles, hug random strangers and purchase sushi from a gas station!

We've been blessed with a few nice days in Chicago, and I have no activity restrictions so I've joined Craig on his therapy walks. He pets every dog we meet, if allowed, and I've had to resist that urge. Thanks Brian for taking care of our four legged child.

Thank you for all the prayer coverage. I'm still infection and fever free! Thank you Lord! Please continue to pray that the germs stay away and my immune system does indeed come roaring back and I knock the number of stem cells needed for harvest out of the park!

Today I'm so thankful for modern technology that allows Craig and I the ability to FaceTime with Emma and Luke! I believe I've come to appreciate the inside of my sons nose and tongue in a whole new way. Hearing about their day, seeing their silly faces and listening to the trials of a typical 5th grade girl, make the distance between us not so painful. I miss them with a longing that is palpable, but I'm so thankful this is temporary, and I'm so proud of how well they are handling all of this! Emma and Luke, we love you forever and ever and all day long!

With Mother's Day tomorrow, I have to take a minute to be thankful for several moms in my life. I know too many great moms to mention, so I will just keep it to family today. My sister, Jennifer, who's had her fair share of lemons, but remains an outstanding mom, sister and friend. She is at her oldest daughters college graduation as I type this (We're proud of you, Bri!"). My sister-in-law, Rita, also no lemon stranger, who's holding down the Raymond fort on the East Coast. My mother-in-law, Judy, also no lemon stranger, who raised two boys like Chris and Craig (who just finished another sandwich from the groceries she brought us). Mom's are awesome! I know my mom's first instinct would be to take the chemo and the MS for me if she could, but instead, she's giving me a much greater gift by caring and loving on my kids when I can't! This momma's heart can relax and focus on the Chicago side of things. As Kevin Durant said in his recent, heartfelt speech..."Mom, you're the real MVP!". I love you mom, with all of my heart! Happy Mother's Day!

~Veronica

chemo...eeewwwww

2014-05-07T08:27:00.000-07:00

I was discharged yesterday afternoon and our little apartment never looked so good! I was told that I probably wouldn't feel any effects from the chemo until the following morning, and that rang true for me. Zofran is my friend, nausea...not so much. It's hard to explain, but I know my dad will understand....chemo makes you feel like crap! It was tough to walk around the Oncology floor and see the families having conferences with the Doctors, etc. Again, just a reminder of so many others in worse circumstances. Plus, we were in the women's hospital so they would call overhead things like, "neonatal resuscitation team to room whatever" and "airway team STAT to room wherever". Can you imagine me using the nurse call button to say, "Could you bring some ativan to room 1493...for my husband?". I'm just kidding....sort of. Seriously, one floor with folks likely at the end of their lives and another floor with little ones fighting at the start of theirs.

We saw another familiar face yesterday. Jeff Disney was in town for an ABEM oral board meeting. It was great for Craig to have a mental health break as he and Jeff had a nice dinner . I opted out and treated myself to another Zofran. Although the the treatment may be hard on me physically, I know it's hard on Craig emotionally to see me go through this and not be able to spring into action. The ER world works much faster and more efficiently than a hospital floor. Did I mention that he doesn't like to sit still for longer than 15 minutes? I think he's found every possible secret passage, walkway, elevator...he's left no stone unturned. It would be fun to watch the security tapes..."where is he going now, why is he in the parking garage, is that the illegal photographer?".

Now, I just wait. That's fun. Waiting...eeeww! My blood counts will start to drop and will be at their lowest around Monday. I don't have a ton of restrictions, but I do need to be careful and wash my hands and wash them again and maybe one more time after that. No buffets, no salad bars, stuff like that...no sushi. Today we were hoping to swim in the Chicago River and catch and eat raw fish, so I guess that's out. To all my prayer warriors, please pray I avoid any bugs/germs/general nastiness that would cause me to spike a fever and have to visit the good people at Northwestern ER.

Today I'm thankful again for Craig! My blog is a collaborative effort . He's a great editor/contributor and makes this blog much funnier than it would be. After the hospital room, I'm thankful for my quiet, small, safe little apartment! I'm also thankful for the outpouring of love and support we continue to receive from all of you! It's humbling, motivating and frankly, brings tears to my eyes!

~Veronica

And so it begins...

2014-05-05T16:48:00.000-07:00

This morning got off to an exciting start with Craig being threatened by the elderly security lady, because apparently you can't take photos anywhere in the lobby. How anyone would know this is beyond me, but leave it to the crazy Oregonians to stir the pot. Hence the look on my face in the photo below. You can all see what a security risk this pretty glass sign represents. She must have some pull because I didn't start my chemo until 5:30pm. Huge bummer!

Taking the forbidden photo!

IV fluids are now hanging with mesna to prevent cytotoxan induced hemorrhagic cystitis, zofran/emend/dexamethasone for nausea and a triple dose of lasix to get all this fluid out. It's a good thing the bathroom is close...because momma bear said "no!" "no!" "no!" to the foley and Craig politely suggested they put one in the security guard so she could more carefully watch the lobby for any rogue photographers. If you can't laugh you'll cry.

As I write this, the cytotoxin is going and I'm experiencing a little of "wasabi nose", a common side effect that gives you a burning sensation in your nose. Very tolerable so far. Craig just finished some take out Mexican in celebration of Cinco de Mayo, so hopefully he'll be leaving soon! If all goes according to plan I will go home tomorrow and start neupogen injections on Saturday.

Today I'm thankful for Northwestern Hospital. It's not perfect, but most everyone has been kind, helpful and compassionate. I'm thankful for a beautiful hospital room with a view of the city that's allowing me to soak up some vitamin D while inside. I'm thankful that I'm alert enough to refuse a foley and for whichever police officers would have been called if my chemo hadn't been started before 6pm!

~Veronica

The Weekend Update

2014-05-04T18:27:00.000-07:00

We had the privilege of hanging out with some very cool people...family! Craig's brother Chris and wife Rita came in for the weekend. It was great to see two familiar faces in this vast city. Since we live on opposite coasts we rarely get a chance to hang out, so this weekend was long overdue. Chicago has so much to offer and we enjoyed walking around the city, an architectural boat tour, good food and a Polish constitution parade...who knew? It seems weird to celebrate that my preliminary testing went well so I can undergo chemotherapy! How exciting! They arrived on Friday and we were able to finish a busy week in a positive light. Rita even re-arranged the apartment furniture and got me some really cool socks (among other things), but I'll save those for another post. Suffice to say, Craig is not the only Raymond who seems to need to be on the move...CONSTANTLY! Thank you, East Coast Raymonds!

Tomorrow, I start my first phase of this stem cell process, mobilization (killing mature T cells and mobilizing new stem cells). This will be followed by harvesting and transplantation. I'm to report to Women's Prentice Hospital at 7:30 tomorrow morning. I will be staying overnight and receiving my first round of chemo. I'm just ready...ready to implement this plan that has been over a year in the making. Sunday was laundry day, exercise and opening another package from the great folks at Providence Newberg ER.

So today I'm thankful for family, some who are related by blood and others who become so when they rally around you and show you their love and support from across the miles.

~Veronica

Last. Period. Party.

2014-05-02T07:39:00.000-07:00

We met with Dr. Burt the other day and all my preliminary tests indicate that all systems are go for transplant. He told me that due to my age (eh hem), this treatment will most likely throw me into early menopause. They asked me if I would like to store/freeze any of my eggs, but given the look on Craig's face when I asked him; and the fact that I might have to start CPR on him...I said "no".

So, in the spirit of celebrating the small things some of my dearest friends threw me a last period party! Who wouldn't want to celebrate that??? It was a hoot! I walked the red carpet, we ate red things, drank red things and laughed a lot. The decorations centered around feminine products...I'll leave it at that. Thank you girls for the last hurrah!

Today I'm thankful for friends like these who help make this lemonade sweeter! You are loved! I can't wait to throw a "best wig party" with all of you!!!!

~Veronica

Point A ------------Hematopoietic Stem Cell Transplant

2014-04-30T15:42:00.001-07:00

Now that you all know I'm in Chicago about to undergo a Hematopoietic Stem Cell Transplant (HSCT), I felt like I have some missing pieces to fill in. I know some have asked about my symptoms. Did I try any disease modifying medications? Other than my doctor telling me about HSCT, did I research this? Did I try a holistic approach? I hope to answer some of these questions in this post. If this doesn't interest you, leave now and come back another day for our regularly scheduled programming. This will be a lengthy post, but I promise they won't all be this long.

My earliest MS symptoms started in the summer of 2012. I happened to be reading about my doctors' recovery after his stem cell transplant. He mentioned that he was regaining sensation in one of his big toes, something he hadn't felt in years. I remember thinking to myself, "What a coincidence, my left big toe is numb too!". I quickly reasoned that I had just worn my flip flops too long that day. Fast forward several months to when I was visiting my parents in San Diego at Thanksgiving. My dad and I set out on our traditional hike up Mt. Woodson. It was a gorgeous day, as most days are in San Diego, and we finished our hike without incident. When I woke up the following morning I noticed my thumb and forefinger of my left hand were numb...weird, I must have pinched a nerve. This continued for the rest of my stay, along with a massive headache and more than my usual I-have-two-young-kids fatigue. Being the good nurse that I am...I ignored it all. The numbness then spread to my entire left side, so after two weeks, I told my husband and made an appointment to go see Dr. Pfefer. An MRI was ordered and he told me at that appt. it could be MS...amongst other things. The MRI showed I had several old, non-enhancing lesions, and a significant sized enhancing lesion on my cervical spine (C-4 to be exact) as well as several in my brain. MS was confirmed and I went to see my neurologist. Dr. Pfefer mentions this in his talk that I have posted in my links on the side, but it bears repeating. MS is an autoimmune disease, but it manifests itself with neurological symptoms so patients are handed over to a neurologist for their care. Neurologists treat the symptoms of MS, but MANY are not up to speed and resistant to new treatments. In their defense, most do the best they can with a tricky disease and they are trained in a certain way, but I digress...

I was given an IV course of steroids to decrease inflammation in my c-spine and I was instructed to start Rebif. Rebif is part of the front-line CRAB (copaxone, rebif, avonex, beta-seron) immuno-modulating drugs that MS patients are prescribed. At their very best they are only 30% effective in slowing down the disease, not stopping it and not repairing any disability. These drugs effectively tell your immune system to not be so vigilant. They make you feel yucky and they're painful to inject. I might add that these injections are extremely expensive, they run about $5,000 a month. MS is a cash cow for Big Pharma. The makers of rebif pay your yearly deductible, if you are insured, just for being on their medicine. I could go on and on... suffice to say, Big Pharma has a conflict of interest when it comes to MS patients and the mighty dollar. The meds are expensive, profitable and patients are on them for the rest of their lives. Is it any wonder that pharmaceutical companies help sponsor MS clinics, etc? If a patient were to have his or her MS halted or cured, then the meds would no longer be needed. You won't learn about HSCT from your drug rep.

It was at this time that I also took a hard look at my diet. I was determined to fight MS from all angles. I wasn't sure how much it would help, after all I already followed a low fat diet and exercised regularly. I read several books and spent countless hours on the internet. One of the most interesting books I read, that I highly recommend, is Grain Brain by Dr. Perlmutter. Talk about a paradigm shift in our way of thinking about cholesterol and low fat food products. I now follow, and have since my diagnosis, a paleo/gluten free diet. I feel so much better eating this way and I think my MS would be more active if I wasn't. Craig is not yet a convert and he tries to convince me, for example, that cave men did have nachos.

So, at this point I've tried IV steroids, I've been on rebif, and I've changed my diet. Unfortunately or fortunately, depending on how you look at it, I relapsed again with optic neuritis to my right eye. MS was attacking my optic nerve. The vision to my right eye has been drastically compromised and remains so today. When I hike with Craig and Hickory, my numbness increases but continuing to exercise and remain active is recommended for MS patients. Cold makes me even worse than the traditional MS problem, heat. I have persistent ringing in my ears, weakness in my legs and this weird sensation that my left foot has stepped in water. I had to fail two disease modifying medicines in order to be eligible for the treatment Dr. Burt was offering. The minute I got home from my second course of IV steroids, I contacted Dr. Burt and his team and was given an appt. to come for an evaluation in July of 2013. I was also evaluated at Rush University, during that same trip, by a Neurologist, Dr Balabanov, who specializes in MS. The waiting room experience was depressing and instructive.....clearly my MS future would not be bright and the current therapeutic regimen would be ineffective. I realize everyday that people receive worse diagnoses and as a navy veteran, I think about some of the horrific and life changing injuries that our troops sustain. We all have to play the cards we are dealt.

After about five appeals plus an external board review, letters from Craig and Chad Pfefer, copies of articles and research, emotional conversations with faceless insurance executives and support from Northwestern..... well, we would have no coverage. The insurance company (for now) is willing to cover the meds for the duration of my life, but not willing to cover a procedure currently with an 85-93% success rate. The cost of the procedure pales in comparison to the average lifetime cost of MS and is equivalent to several years of the med. It just makes no sense. Anger really doesn't treat MS and bitterness never treats anything. Many insurance companies now cover this procedure.

My goal is to educate everyone reading this, especially those in health care, that there is another option for the treatment of MS. As Dr. Burt and others publish more of their results, HSCT for MS will become more accepted and neurologists and insurance companies will have to take notice. MS is a leading cause of disability in young people, but maybe it doesn't have to be. Many countries offer this treatment, and I was accepted in Moscow and Tel Aviv if Chicago was not option. I belong to two different groups on Facebook, one is for patients seeking more information about HSCT in Chicago with Dr. Burt (Dr. Richard K. Burt Stem Cell Study (HSCT) Chicago). The other (Hematopioetic Stem Cell Transplant- MS & Autoimmune Diseases) is a broader group that focuses on facilities performing HSCT around the world. These groups have provided me a wealth of information. They are all former patients or soon to be patients about to have HSCT for MS or for a different autoimmune disease. I would encourage anyone interested in finding out if HSCT is for them to join these groups. If, say, twenty people read my blog, I'd wager 3-4 of them will know someone who has the disease or who will get diagnosed. Spread the word! Be your own health advocate and find a doctor who is willing to think outside the box.

I will now step off this soap box. Today I'm thankful for my sunday school teacher that I had when I was 4 years old (yes, I said 4). She has sent me a card every week since she heard I would be starting this treatment. She reminds me that I have a good shepherd who walks with me beside still waters and through the valley of the shadow of death. I'm so glad HE does because this sort of feels like a valley with a shadow. This MS girl loves you Mrs. Tepfer!

~Veronica

Ready...Set...chica-GO

2014-04-28T16:26:00.001-07:00

After some tearful goodbyes, yesterday morning, Craig and I headed to the airport. My parents arrived a week early to get the routine down. My mom will be running the Oregon Raymond ship while we're gone! I leave knowing that my kids are in very capable and loving hands. We miss and love you Emma and Luke. Thank you mom, you are loved! I'm not worried about my human kids, but I do worry about my 4 legged one! We have a 10 month old chocolate lab that is going to be my moms biggest challenge! He is, however, very protective.

If you see this chocolate tornado (aka-hickory) on ebay...please rescue

Craig and I landed safely in Chicago and have now settled into our new "home" for the next three weeks. After that, I will be inpatient and Craig will have this nice bachelor pad to call his own. It's a cozy, little one bedroom apartment in downtown Chicago, just a short walk from Northwestern. It's not the Ritz, but it will do just fine for what we need. If you're thinking of coming here for treatment, it's a great, affordable option. DeWitt Place Think Europe, think small!

I started my preliminary testing bright and early this morning. First, my lungs underwent a pulmonary function test (good thing I quit my 5 pack a day cigarette habit yesterday!). I had an echocardiogram, blood draw, chest x-ray and an electrocardiogram. To make things easy, we had to be on floor 19 followed by floor 18, followed by floor 4... I was glad to hear that my heart was on the left side of my body and was indeed pumping blood...all good things. The lab tech who drew my blood was an excellent stick and got me on the first try! This doesn't always happen for me, so I was extremely happy. I had already had a dental exam at home so that saved me another appt. My dentist cleared me for transplant and I'm happy to report I have no signs of meth teeth! I finished my testing just in time to meet up with Craig and his parents, Dave and Judy, who stopped by for a visit on their way back to Michigan. It happens to be Dave's 77th birthday, so it was fun to share his day with him. Our refrigerator and pantry are filled with wonderful things to eat and enjoy. Judy thought of everything...even a DVD player! You Rock!

Tomorrow, I have a vein check. It sounds very interesting, especially when they told me it will take about 90 minutes. I'm thinking you might be able to download my veins onto google maps for your viewing pleasure. Back in my days as a nurse, I loved anything IV's...starting them, troubleshooting, changing them out, difficult sticks, etc. As it turns out, I happen to be a difficult stick myself and am wondering after 90 minutes if I'll be handed a slip of paper that states; "FAIL, recommend you never get sick...no illnesses for you, ever!". I could put a drinking straw in Craig's forearm, so maybe he can loan me one when they come calling. I look forward to seeing what new fangled gadgets they have for vein mapping.

Today I'm thankful for Craig. I know many people face this treatment on their own, but I'm so glad I have him with me. Within three blocks last night, we were asked for money, saw a hit and run and witnessed a man punch a car after it almost hit his friend in the crosswalk. That's when I told him I was glad he was here. We're so grateful to his partners for their understanding and support during my treatment. He's kind of a great guy, if you didn't already know. All of me, loves all of you, Craig Raymond!

~Veronica