T minus 2

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

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

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

To clarify, these photos are in the morning

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

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

~Veronica

T minus 3

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

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

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

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

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

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

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

~Veronica

The Countdown

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

                                                       T- minus 5

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

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

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

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

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

        Chicago 2013 for my initial evaluation with Dr. Burt

~Veronica

The Yetti and Spaghetti

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

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

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

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

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

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

~Veronica

 

Home...

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!

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

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

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

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...

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

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.

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