Discharged!

No, you did not misread the title of this post - "Discharged!" As surprised as some of you may be, I was even more surprised how fast it all came about. On Saturday evening I found out that my "counts", neutrophils (the germ fighting cells) had started to come back as of the day before. The Dr came in Sunday morning to tell me that he would be cutting back my antibiotics and if I stayed fever free I would be discharged on Wednesday. I could not believe it, I felt so awful on Sunday, how could this be? Well, as the antibiotics were cut back, I did stay fever free, felt a bit better and I was discharged a few hours ago. Stephen and I are staying in St. Louis for the moment because my counts are still recovering and I am still at risk for infections, pretty weak and tired too. I do need to be here for my labs and bone marrow aspiration on Tuesday; the results of which will then determine what happens next.

I must say that I enjoyed a great double shabbat with Stephen in St Louis Skyping with my mom and Saul, and then a few hours later Gene, Julia, and Daniel and I made shabbat again! On Saturday, Kelly and Kurt drove down for the afternoon and that was quite a treat! Unfortunately, I was not in shape for a visit from Kari and Eli on Sunday. I did resolve and was able to visit with Mac and Ann who came to visit me yesterday afternoon and we enjoyed a lovely visit!

So, for the moment communicating by email is best because I am not sure where I will be between now and Tuesday.

Stay tuned...

Deborah

A few firsts!

Since my last post I have sorted out the low heart rate which was caused by one of the chemo drugs. While I was hooked up to a portable heart monitor, I carried it around in a cheery pink floral bag that Alana made for me earlier this summer during one of her projects with the kids at Children's Hospital where she volunteers. I must say though, carrying it around 24/7 brought back memories of the Ruth Buzzi and Arte Johnson skit "old woman, Gladys Ormphby, with the purse" on Rowan and Martin's Laugh In! Here is a link to the skits:

http://www.youtube.com/watch?v=aaJ-HmfAnJM

I was also able to loose the 30lbs of water that I gained in 3 days after the second chemo with the aid of diuretics and keeping my feet up. My legs progressed from the size of elephants, to Brown Swiss Cows, to Holsteins, to Jersey Cows! Amazing how one's body can expand and contract in the time of a week! Good thing I had a pair of adjustable slip-on shoes to
accommodate the ever changing girth of my feet!

A week ago Friday I had the great pleasure of visiting with Kari and Leah who brought wonderful challah and shabbat treats! Leah is a doctoral student here at Washington University in St Louis and I really enjoyed learning all about her project. Karen and Julie came down last week as well and it was wonderful to catch up on all their summer news and Julie's upcoming study abroad in one of my absolute favorite cities: Edinburgh!

Stephen and Daniel arrived Thursday afternoon to spend the weekend and I was thrilled to hear all about Daniel's canoe trip to Quetico; and was especially pleased that he was able to experience some of Stephen and my favorites: Loons, aurora borealis and wild blueberries; not to mention swimming every day of course!

Freda was also a pleasant surprise on Thursday afternoon. She told us all about the amazing lunch she enjoyed in Effingham at the "Firefly Grill." They have their own farm produce and also procure what they do not grow from local farms. Believe it or not this gem is tucked away just behind the Starbucks.

If you do not know already, I adore food and flavor! I was really
surprised to find at the point just before my second chemo that I was enjoying a heightened sense of taste. So much so, that each bite of the same food, meal after meal, still tasted delicious! After my second chemo that has all changed. One week ago I hit a food flavor wall! I could not fathom eating anything I had been, it all started to taste the same. Luckily, Saul and Stephen were visiting and I sent them off to Schnuck's in search of any and all types of sauces that I could add to my meals for flavor. They returned with a variety of things which I worked through over several days to figure out what would agree with me. We hit upon some fabulous sliced, sun dried tomatoes in olive oil, and a company called Cibo Naturals that makes a variety of fresh pesto sauces and tapenades. We even discovered that cream cheese schmears from Einstein Bros. is also a satisfying flavor enhancer for pasta.

This week I was able to taste sweets again and it is a timely change as I had to give up my two beautiful bowls of oatmeal in the morning, which I thoroughly enjoy, for one bowl and an Odwalla mega protein drink! The funny thing is that it tastes just like "Bosco!" For those of you who have never heard of Bosco, think Hershey's.

Since I was able to taste sweets, I was also able to enjoy a special treat this weekend from the frozen yogurt shop "Chill", compliments of Alana and Jenny: cookies and cream with salted caramel - oh it was divine!

This past Saturday Daniel and Stephen wheeled me around the Siteman Center, which is attached to Schoenberg Pavilion and empty on the
weekends. We even ventured outside for a little while; and although temperatures were moderate for St Louis, the mask I need to wear heats up pretty fast, so it was hard to be out for long. We did revisit the 14th floor of the Siteman Center where we watched the Fireworks on July 4th, and the view remains phenomenal! On Sunday I walked with Stephen to the Siteman elevators and walked on the 14th floor unaided! We spied Alana and Daniel coming out of Panera across the street and, with the help of our cell phones, they were able to see us waving to them!

So, we are +day 18 from my second chemo, when my counts recover, we will see what is next, may take a couple more weeks though.

As always, thank you to everyone who is helping our family in Urbana, we greatly appreciate all your support!

Love,
Deborah

Family Visitors from Toronto!

This weekend was very special for us.  Stephen's brother David, and my neice and nephew Alora and Mitchel visited us from Toronto!  They arrived Thursday, driving all the way from Chicago's Midway Airport.  They spent a good part of their visit with me in the hospital; otherwise, they were visiting St. Louis with Alana and Saul.  Today's guest blogger is David.

David, me, Mitchel and Alora

Well here we are at Barnes Jewish Hospital in St Louis - i guess i never really thought we would ever be visiting this city, especially in the dog days of summer. but here we are! hanging out with our family and supporting deborah through these difficult times. my impression about this disease is that it is a long process with so many variables- i confess, i don't know much about the specifics but we are sharing information and hoping for successful results from the 2nd round of chemo. The hospital is impressive as they even have valet parking! as well, the staff at the hospital are amazing... family and friends have been so supportive, and loving.  stephen, alana and saul are here and there is such a positive vibe in the room. we missed daniel but i'm sure he is having a great time in quetico. as for st louis, everyone we have met has been super friendly- i cycled around forest park this morning and have been ingesting a lot of carbs thanks to saul and mitchel. (i think the hospital scale is off by 10lbs). alora and alana went out last night but they have been pretty tight lipped about it, the only clue is alora has been wearing sunglasses inside!  we are leaving tomorrow morning and hope to stay in touch on the blog...love david, midgey, and alora.

In Praise of mothers

Mothers are a special breed of people.  When they hear their children need them, at any age, they drop what they are doing and rush to help. Stephen's mother Georgina and my mother Nancy have done just that during this difficult time for our family. Both Georgina and Nancy lead lives full of activities; they sorted out their schedules and they arrived; Nancy first for two weeks and Georgina just spent an entire month in Urbana. Nancy is returning soon.

A month is a fair amount of time to take out of one's schedule and we really appreciate everything Georgina did - from the regular housework chores, lawn care, extra projects in the house, to sorting Saul's busy schedule with rides to all his activities, making sure Daniel did not ride his bike to appointments 5 miles away (because it increased my stress level), and teaching Saul and Daniel the finer points of how to dust and vacuum their rooms while she carried the bulk of the housework. Moms, thank you for everything, we love you!!

Ding, ding, ding, out of your corner for round two!

After my bone marrow last Thursday I was sure I would have had the weekend to continue getting stronger before I knew the results. However, Friday night, just as I was enjoying  a skype shabbat with Stephen, Daniel, and Georgina the Dr came in.  My results showed that my leukemia was resistant to the first round of chemo, higher % blasts and lower % cellularity than expected and so I started my second round of induction chemo that night. My second round of chemo was a new cocktail called MEC  (Mitoxantrone, Etoposide, and high dose Cytarabine) given over 5 days; my last dose was Tuesday night.

My next bone marrow will be when my counts recover, sometime toward the end of August, and at that point if I do have a remission, I can leave the hospital but not St. Louis and will be on a faster track for a stem cell transplant.  If I am not in remission, I will go right into a stem cell transplant.

My cousin Barbara, who is an artist, created a unique hat out of the net bags that you would buy oranges and lemons in. So with my new hat I was ready to ride the roller coaster of my second round!  The first two days went rather well, unfortunately on the third day I had a fever. Woke up the next day with swelling and ended up with a low heart rate, both of which are in the process of being sorted out. I also received a fabulous hat and scarf from my friend Kelly that I was using the first two days to walk the hallways. Ladies, thank you for keeping me looking my best during my second chemo-makeover, I am a real hit on the hallway runway.

Ready to ride the roller coaster with my new hat from Barbara!

I am going to try to watch Barcelona play Chivas de Guadalajara tonight and I will be wearing my Puyol jersey!

As always, I thank all of you for supporting us in Urbana which continues to give our family strength during this difficult time.

Deborah

P.S. Check out Saul's post just below mine.

Crazy Train

A few days ago, I woke up quite sore, but not the usual aches and pains that accompany waking up the day after a grueling soccer game; this was a different beast entirely. The previous day, I had helped Daniel clean the entire house, a necessary chore that had probably been neglected for far too long. We vacuumed carpets, wiped floors, washed kitchen counters, cleaned windows, cut the lawn, watered the plants, even picked the clothes off the floors of our respective rooms.  And from these various tasks not only did we gain a tidy house and sore bodies, but a deeper respect for all the work mom does for the family and house that is oft overlooked.
As you can tell I am not acclimated to all the ins and outs of house work, but it is just another thing to familiarize myself with during these crazy times. A few goals I have:
- Learning what every button on the washing machine means
-Figure out which attachment goes on the end of the vacuum
-How to prepare a meal besides cereal
However, the true documentation that shows that everything is not as it usually is happens to be a photo of mom from a few weeks ago. It has taken much begging and convincing to let her release the photo to the blogosphere,  but eventually she agreed that the additional views and energy it would add to the blog would be worth it. Enjoy this once and a lifetime opportunity to view Deborah with a mohawk! A symbolic haircut that according to wikipedia is associated with punk rock subculture and anti-authoritarian beliefs! Imagine, my own mom, who won't even wear blue jeans, pledging her allegiance to a league of such influential anarchistic icons with her coiffure such as:
-Ramones
-Sex Pistols
-Mr. T
-David Beckham?
All in all, in the words of another counterculture muse, "The times they are a-changing." All we can do change with them and continue living and learning, and enjoying the little moments, such as giving your mom a mohawk!
Saul

Rockstarr!