Laying Low

Hi all!

Thanks so much for all of your email and phone support.  Bea and I are doing well and increasingly looking forward to getting home to our kids.  I feel ok today.  This treatment really is hard on the gastrointestinal track at least for me.  We walked a lot yesterday so I'm quite sore but that's a good thing.  We pushed the limits and I basically hit a wall around 10 minutes of walking and have to stop.  I'm able to go a little further by using Bea's shoulder to hold on to.  Bea gets so worried that I'm going to fall she convinced me to buy a cane. 

The problem is I have no idea how to use it to assist me to walk...  Professional athletes video tape themselves to learn how to improve performance next time so I asked Bea to tape me and I will study the tape to get better... 

Other than these exciting developments, not much else to report.  The weather today was very rainy, foggy and cold.  We decided to stay in as my immunity is probably at it's lowest from the chemo last week.  We're hoping for better weather tomorrow as there are still several things we want to see before we head home later in the week.  Our magic number of stem cells we need Thursday is 2 million.  I will have to return on Friday if we don't reach that number and I will have to keep the Vas Catheter in my neck overnight which won't be comfortable.

Plenty of Blessings

The weather here in Chicago has been chilly, and yes windy.  Not too much outdoor venturing yesterday except for mass that I'll exlpain below.  It's supposed to rain for the next 7 days straight.  This will significantly set back my marathon training!  I was up to .002 miles per day!

I feel good today.  We just got back from a nice but chilly walk.  We went food shopping which I enjoy because pushing the cart gives me something to lean on.  On the way to the store a man said to me "man you look bad, you pull a muscle playin ball??  I didn't think my walking was noticeably altered but my wife gave me a look like uhhh yeaaah! 

This morning I started Neupogen (filgastrin) injections by giving myself 2 shots in the abdomen.  The purpose of these shots is to help boost stem cell production in preparation of the "harvest" I love that word don't you?  I have to take the shots for the next 6 days.  I have to take them by 7:00 AM God knows why, so of course I woke up at 5:00 to get in the zone.   After 6 years of IM Avonex injections in my upper thighs I knew it would be a piece of cake but needles are needles and they're never fun.  My wife, bless her heart is physically unable to stick me with a needle.  Last year when we determined my vitamin D was very low she attempted to give me an IM vitamin D injection in the butt.  After 4-5 failed attempts of "half sticks" with the needle flailing around halfway in we determined it's probably better I maintain the responsibility for injections.  The needles were indeed a piece of cake.

I also started taking the heavy duty antifungal and antibiotic medications as I will drop into a neutropenic state tomorrow or Monday for a short while from the chemotherapy last Monday.  This means I basically have no immune system and I have to be extra careful to stay away from sneezers and coughers.  This HSCT process is really interesting when you think about it.  First they blast you with one day of chemo to lower your immunity, then they "super charge" your stem cell production (immunity) for the harvest, then they ablate your immunity again with 5 days of chemo and then reinfuse you with your harvested stem cells

We have a beautiful cathedral right across from our apartment.  At mass last Sunday they mentioned a special mass yesterday afternoon where the Cardinal from Chicago would be the Celebrant.  My wife and I, not having too many conflicting meetings on our calendar decided we would try to fit it in.  When we arrived at the cathedral 30 minutes early (to get a good pew) we were pleased to see that the mass was being celebrated by not only Cardinal Francis George from Chicago, but also Cardinal Dolan from NYC, O'Malley from Boston and Mahoney from LA.  For those of you not familiar with the accoutrements of the catholic church, that's a lot of pointy hats!  I was so glad I wore my nice jeans and sneakers while everyone else was black tie (oops!).  It turns out there was a big fundraiser last night for Catholic Universities of America so that's why they were all there.  However, considering there were only 150-200 congregants it felt more like a personal power prayer service from the higher echelon of the US catholic church for my wife and I. 

After mass I did what every God fearing Irishman is required by law to do... I took my wife to a bar!  That's right mi lassie and I bellied up just in time for happy hour.  My wife took us out by ordering one of their special and I might add delicious spicy bloody mary's and I went with a eh hemm... Virgin Mary.  I realize it's probably just me but the look on a barmaid's face when an Irishmen bellies up and orders anything other than a beer or a shot is well Disappointment. I was waiting for her to ask me something like, should I bring your peanut butter and jelly sandwich before or after your chocolate chip cookies?  I tried to recover from my Low T count drink order by asking for hot wings yeah that's right I said HOT!!  And no blue cheese on the side to cool them down either!  (she didn't know I'm not allowed to eat blue cheese during chemo)  ((and I didn't tell her)). 

So my wife and I sat there for awhile, talking and watching everyone having fun drinking and having cocktails and drinking and ordering drinks...  Then I ate 1 of those ridiculously hot wings, paid the bill and we went home. 

Following Instructions

The primary purpose of this blog is to inform other MS'ers of the specifics related to HSCT for the cessation of disease progression.  However, keeping family and friends apprised of my condition and progress is also very important to Bea and I. 

One suggestion applicable to all readers of this blog is to always follow instructions from trained professionals.  When a medical team advises you that a certain treatment, in this case Cytoxan chemotherapy, may cause some how shall I say "internal clogging", it's not adviseable to eat bananas, chunk Parmesano Reggiano and left over famous Chicago's stuffed pizza as I did Tuesday evening...

Let's just say yesterday's plan to "see more of this beautiful city" as I predicted in an earlier post was temporarily postponed until systems returned to normal.  Holy prune juice Batman!!!

On a more serious note, although that was very serious... I'm feeling ok.  Bea and I went for a short walk this morning to the supermarket more for excercise than groceries but we accomplished both.  I'm definitely running on low energy but overall feeling good. 

We're leaving soon to the hospital for more blood work and a "vein check" to make sure the Vas Catheter they will put in my neck down close to my heart to filter my stem cells next week will fit??  Not sure what this will include but I'm sure it will be fine. 

After those appointments we're heading to the Adler Planetarium for an afternoon showing of some cosmos searching, life beyond earth stars show.  Tonight we will head out to Jakes to watch game 7 of my NY Rangers first round playoff series. 

First Round Complete!

Hi All,

My wife and I left Prentice Women's hospital around 2:00 this afternoon after a successful round of Cytoxan, Mesna, and lots of Lasix.  The admission went very well from the moment we arrived yesterday at 7:30 AM for pre-admission labs to admission through treatment and discharge.  I can't say enough about the professionalism, commitment and quality of the physician and nursing staff at Prentice Women's Hospital. 

We were assigned a private room on the 16th floor overlooking the lake.  The room was well appointed with a recliner, couch which turns into a bed, large flat screen TV with good cable service and a few movie channels.  My bed was ok although the mattress inflated and deflated every 15 minutes to avoid bed sores for long term stays.  The food service was actually not bad.  Of course not everyone is as lucky as I am to have a private nurse like my wife below :)))

The treatment process was thoroughly explained and executed beginning with an examination.  My IV line was quickly set and the pre-chemo drugs to prevent nausea started flowing.  The nurses only had 4 patients each on the Oncology ward so they were very attentive and thorough.    My wife slept on the pullout bed in the room and she was great support the whole way.  We actually got a few good hours of sleep.  We had a few IV machine alarms between 12-1 but after that we slept through to 5:00 for the morning blood draw and then we stayed up and were treated to a beautiful sunrise over the lake. 

Today I'm a little fatigued with headache but no nausea, vomiting etc.  My only complaint is incessant hiccups.  Amy Morgan Dr. Burt's amazingly knowledgeable Nurse Practitioner said this symptom is rare but she's seen it before.  I had it once before after the 3rd day of an IV steroid treatment.  Dr. Burt came to the room in the morning to see how the treatment was tolerated and for a brief conversation.  Before we were discharged Amy brought the discharge report with clear instructions for the next week and a half and sat with us for quite awhile discussing the next steps.  She was there for as long as we wanted her to be. 

We're now back in our apartment getting ready to eat more delicious stuffed pizza from Giordano's.  Tomorrow we will venture out again to see more of this beautiful city.

It's Go Time...

After almost 8 months of countless conversations, studies, applications, evaluations and phone calls, tomorrow I will start the mobilization process of AHSCT.  In so many ways I am a lucky man.  There were many times this journey could have been stopped for very good reasons.  But alas tomorrow my wife and I will start the most important treatment in the 10 years since my diagnosis to stop the progression of this hideous disease and with continued luck reverse some of the physical deficit I have incurred particularly in the past year. 

This treatment comes just in time.  Yesterday on our way to the gate for our flight I couldn't walk all the way to the gate without stopping to rest.  The stress of leaving home, our kids, work etc. took it's toll and stress always has an impact on my mobility.  As I sat in a chair in the middle of the hallway tingling from head to toe, angry and embarrassed, my wife approached me with a wheelchair.  For 10 years since my diagnosis my worst fear has been "the chair".  I had never used one and I stared at it for what seemed like an eternity.  A wheelchair for me has always meant the end, failure and misery.  My wife was so amazing in her caring approach.  She cajoled me by insisting this was nothing to be thought of seriously.  I acquiesced but insisted that I wheel myself, however as soon as I sat down she whisked me down the smooth floor of the terminal.  She joked that she couldn't believe how easy it was to push.  Thankfully the ride ended as quickly as it began as we turned the corner and found the food court.  Given that I had already been resting and then staring at the chair for 10 minutes I was able to jump up and walk in the food court, the plane and thankfully the rest of the day including 2 hours of shopping last night to stock the apartment.  Evenings are always better for my mobility for some reason.

We arrived in chilly Chicago last night and moved in to our wonderful apartment on the 56th floor of a luxury building a few blocks away from Northwestern.  My wife and I are both freaks about smells and thankfully this apartment looks and smells great.  It is a beautiful one bedroom unit with a modern kitchen and bath both decorated nicely with granite, marble and new appliances.  I must thank again my friend Chad Pfefer for recommending these units at 30 E. Huron.  Dr. Chad completed HSCT a few months ago at Northwestern and he's back to work with his practice in Oregon continuing his recovery.  Chad's blog can be found at www.caringbridge.org/visit/chadpfefer 

Today we started the day at a beautiful mass at the Holy Name Cathedral right across the street from our apartment.  It was a coincidence to have this beautiful place so close to us.  From there we went for wings and a beer for lunch to watch the Knicks game (my kind of day).  We walked quite a bit downtown after a movie to and through the Navy Piers.  This city sure would be beautiful if it ever gets above 30 degrees without gale force winds!

Tomorrow I start with some baseline lab draws at 7:30 AM followed by admission around 8:00.  From what I understand this will be a long day of waiting around for treatment, forms etc. I had a nice call with my 13 year old son Matthew this evening wishing me luck and I've heard from many people wishing me well.  The worst part of this process is imposing in so many people's lives to care for, worry about and pray for me.  Hopefully we will all see great results in a few months.  VAMOS!!!