24 Nights? Make that 25

Jo's first day at home was also supposed to be her first night at home, but it didn't turn out that way. Due to a nose bleed that wouldn't stop, Jo and Meema were back at MD Anderson from midnight until 4am. If nothing else, it was a great practice run just in case we have a more serious situation that requires a rush trip.

Since the 11th floor at MD Anderson is staffed 24 hours a day and they are taking care of transplant patients every day, Jo essentially has a 24 hour hotline. A quick call to the charge nurse on the transplant floor and just about any question or concern can be resolved.

Home Sweet Home

Or should I say home sweet home away from home? It's not quite like our home in Denver, but considering the evening lows in Denver this time of year, our little apartment is not all that bad.

Jo spent 24 nights in the hospital and I don't think I can really convey how excited she was to leave. Fresh air! A change of surroundings! No chemo pole! Actually, remembering that the pole is gone may take a few days.

Jo's primary day-to-day challenge right now is her energy level and it could take a while to get back to 100%. I'm going to put her at 10% of normal right now. I know that sounds incredibly low, but that's a pretty good guess.

Winner, Winner, Turkey Dinner!

Jo's white cell count is up to 4.3 today and we have packed up her entire room in hopes of being discharged in the morning. I asked to have the bellhop sent up with a cart and they just looked at me funny. After 24 days in the hospital it's pretty easy to accumulate a lot of stuff.

For the next two weeks, Jo will come back to the hospital every day for IV fluids and medications. For the most part she just gets to sleep at home. Our buddy Gerry left this morning and he looked like a new man standing in the hall completely detached from his Chemo Pole. Gerry is staying in an apartment just down the hall from us so I doubt this is the last you'll hear of him. As for our other 11th floor friends, we hope to cross paths in the clinic.

Jo had a nice Thanksgiving meal from room service today. If you can remember back to when this all started in November 2004, this is the second Thanksgiving spent in the hospital. On the bright side, one is much less likely to overeat in the hospital than at a traditional Szymanski Family Thanksgiving.

We also had a surprise visit today from Jo's friend Tamra Hext from Dallas. She and her husband had gone to see her cousin at St. Luke's next door. Tamra was Miss Texas a couple years before Jo and was a strong role model for Jo during those years. Because of that we made a very brief exception to our no visitors policy.

Happy Thanksgiving!

Preparing for Transition

Jo's WBC Count was 3.4 today. That is higher than her typcial readings over the past 4 years. Keep in mind she has been getting Nupogen shots that increase blood counts. A little volatility in her counts going forward would not be unexpected.

Jo's counts are definitely high enough to transition out of the hospital. However, her IV pole still has about 5 or 6 different bags delivering medication and various nutritional elements. Before she can come back to our apartment she must have a total transition to oral medication, she must demonstrate that she can eat enough on her own and she has to have the physical strength to handle the daily trips back to the hospital.

Jo is not coming home tomorrow. Starting on Friday, we'll do a day-by-day evaluation. Our buddy Gerry from El Paso might go home tomorrow morning - he got his stem cells two days before Jo. He said it best when I asked him about it. He didn't say, "I get to go home tomorrow morning." He said, "If things go well between now and tomorrow morning, I get to go home." That's just the reality of a Stem Cell Transplant.

per-spec-tive (n)

Jo's white cell count jumped to 1.4 and she had a little more energy today than the previous couple of days. I asked her how tough the last few weeks have really been. She said the toughest part has been the boredom. Today is her 22nd day in the hospital. She doesn't have the energy to do much, but she feels okay so she is very present to the SLOW passing of time.

I asked her about the physical part and she said it hasn't been too bad and she immediately compared it to her ATG treatment 4 years ago at the NIH. If you don't know about that experience, go back and read our posts from February, 2006. Back then Jo was in the hospital less than two weeks, but every day was intense - blood pressure of 50 over 30, physically sick every day, serum sickness, etc. The time passed quickly because every day was an adventure trying to get the roller coaster of symptoms under control. To be honest, we came into this procedure expecting it to be similar to the NIH, only longer and it just has not been that way.

I remember Dr Alvarez saying that a transplant is just as much a mental challenge as a physical challenge and I am only now understanding what he meant. On Thursday I'm going to a class about life after the hospital. There are long lists of things Jo cannot eat, symptoms of graft vs. host disease, cleanliness practices, do(s) and don't(s) (no more "5-second rule"), managing a list of medications among other things. The recovery process is long and challenging. Fortunately, the physical part is not even close to the memories etched in our minds from 4 years ago.

Do you want to hear the really tough part? We don't know why but a couple of our 11th floor friends have had to get chemo AND ATG in the days leading up to their transplant. Talk about perspective!

Day +12 - Let the Recovery Begin!

Yesterday Jo's WBC count was 0.2 which isn't much different than 0.1. Rather than get anybody's hopes up, I waited to see today's count which came in at 0.7. This is definite evidence of engraftment, right on schedule with what MD Anderson told us to expect. If we follow the same pattern that we've seen with other 11th floor patients, she'll be in the mid 1s tomorrow and over 2 the next day.

A normal WBC count is between 4.0 and 11. For the last 6 years, Jo's WBC count has usually been between 2 and 3. That is considered low, but not life-threatening.

Jo's hair has started to fall out, and over the weekend we shaved it off. Jo had been asking for us to go ahead and shave it all off just so she didn't have to muster up the energy required to wash it. Of course, Jo looks just as fabulous bald as she does with hair. She also has an absolutely stunning ability to accept "what is".

Waiting for Jo's WBC Count to Rise

About a week ago, Jo's White Blood Cell (WBC) Count got down to 0.1 indicating that her own Stem Cells had been all but destroyed by the chemotherapy. Until her WBC count starts coming up, every day is the same - it's all about keeping Jo somewhat comfortable. The chemo often causes sores in the patient's mouth or esophagus, making eating practically impossible.

Jo is also getting Nupogen shots, just like Eddie got before he donated his stem cells. The Nupogen causes bone pain that adds to the discomfort. Jo is getting pretty significant pain medication and nausea medication.

Within a few days, Jo's new stem cells are expected to "engraft" meaning they have worked their way into her bones and they will start producing new blood cells, the white ones being the most important. Those new white cells will repair the damage done by the chemo and they'll "clean up" the remnants of her old immune system.

As Jo's WBC Count increases she'll start to feel better every day and that is further enhanced by the emotional boost of seeing the WBC Count rise. It's somewhat hard to believe, but we are getting close to the home stretch of the hospital stay. Jo might not leave the hospital until early December, but once she gets to the point that each day is better than the previous day, it'll be quite a bit easier to see the light at the end of this first tunnel.

Changing of the Guard

Since October 31st, our very good friend Carol Morris from Denver has been with Jo on a daily basis. She helped Jo get situated at our apartment and then moved into the hospital. Every day she took notes on what the doctors and the nurses told us and every day she was by Jo's side encouraging Jo to take another walk around the block or go out to the lounge for a little social time. And yes, Carol has been responsible for all the Tweeting.

We have been very fortunate to have Carol with us these first three weeks and we are extremely grateful. Thank you Carol!

Last night my mom (Meema) flew into the Houston airport to take over the caregiving reins. As you know, she has been Jo's caregiver on many occasions over the past 5 years, but this will be the first time she gets to take care of Jo without also having Anna on her hip.

Day 8 - Knock On Wood

Is Jo having loads of fun? No. Would she rather be drinking girly drinks with umbrellas on a beach? Yes. Have the first 2 weeks been as bad as we had heard they would be? Absolutely not. Maybe Jo's side effects haven't been quite as intense as others may have experienced. Maybe MD Anderson is just that good. Maybe it's a bit of both.

Don't get me wrong. The nausea would have had me in the fetal position. Jo's a lot tougher than I am and MD Anderson is really good and proactive when treating her. Currently the toughest part is the mental exhaustion, often referred to as Chemo Brain. Focus is tough and conversation takes enormous energy. Still, if that is the worst of it, we'll take it.

So, I know y'all want updates and I almost didn't write this in fear of jinxing the situation. Do me a big favor and find some wood to knock on!

2 Miles into the Marathon

I've never run a marathon. I think I could handle the physical challenge. The mental challenge is another story. Most of us are addicted to mental stimulation. We can't go 10 minutes on a treadmill without our iPod playing our favorite tunes to help us pass the time. Unfortunately, most marathons don't allow the use of iPods.

Jo has barely begun her marathon and the mental challenge has started to ramp up. She is handling the physical part quite well. She spent a lot more time out of the room today than she has in the past week or so. Her energy is very low and is most evident in her thought processes which are currently very linear - just not enough energy to multi-task.

The mental marathon is somewhat different. Day after day is spent in the same room, the same hallways and the same lounge - all while pulling around the same chemo pole. In the not too distant future, we'll leave the hospital and quickly forget how long a day can be. For now, life has given us an amazing opportunity to practice patience. Nelson Mandela spent 27 years unjustly imprisoned. Surely we can survive another 10 to 14 days on the 11th floor of MD Anderson.

I'll Bet You Didn't Know...

As is true of most Minnesota kids, we ate a lot of corn growing up. Corn fields are quite abundant in Minnesota and we did our best to support the local economy. I always thought it was an extremely special treat when we had creamed corn. Just thinking about it today brings back great memories.

When we checked into the hospital 2 weeks ago we were told that for about 2 days after receiving her transplant Jo would smell like creamed corn. No way!!! Having a somewhat entrepreneurial mind, my first thought was, "Why hasn't Gucci thought of this?"

Jo did radiate the sweet smell of creamed corn for about 48 hours after her transplant, but maybe since it was Jo, I didn't think too much of it. However, now is a different story. We often walk laps for exercise on the 11th floor of MD Anderson and we occasionally run across the smell of creamed corn. Instantly, we look around to see if we can identify the patient who must have just got their new stem cells.

By the way...the 11th floor of MD Anderson has 52 patient rooms and every room has a bone marrow or stem cell transplant patient in it. They often have as many as 70 to 80 transplant patients at any one time and very soon, the transplant teams will get 26 more dedicated rooms on another floor.

Jo's status has not changed much and that is what we want to hear. She'll need another 1 to 2 weeks for her blood counts to start coming up and her strength to get to a point where we can take her back to our apartment. Any blog-worthy change of status before then would probably be a hiccup in the road, so keep an eye on the tweets over to the right, but don't be alarmed if there are no major health related blog updates.

Day 3 - Making Friends

Do you have problems? Would you like to know how to make all of your current problems disappear? Go out and get some bigger problems. If life hasn't handed you something like a bone marrow transplant, go out and take something on - raise a $1M for cancer research, reform the criminal justice system or find ways to help the homeless off the streets. If you can afford it, go to Africa and volunteer at an orphanage - if you live in Denver, I'll set up lunch with my client that has been to Africa and her stories will melt your heart. When you take on something really big, the small stuff disappears.

The most enjoyable part of our experience so far has been meeting our new friends out in the patient lounge. First there's Gerry from El Paso. Even behind a mask this guy has a smile that just lights me up! He is only on Day 5 and I can't even tell he's sick. I met his son today who is in medical school two blocks from here at Baylor School of Medicine.

Earlier today I met Temple, who Jo met in exercise class last week. Temple's mom gets her hair cut in Lufkin, TX by the same woman that cuts Jo's mom's hair. Temple's sister works with the mom of Jo's best friend in Lufkin.

Last night, one of the patients was walking exercise laps with her friend and they had their ipods cranking. They weren't really walking. They were dancing down the hallway and they didn't care one bit what anybody thought. On my way out of the building a couple of guys were watching television in the lounge and I commented on how good they looked. Their eyes opened wide and one guy said, "I've been here about 30 days and I'm getting out soon."

There have been plenty of others and one thing is common among them all. Every one of them has a positive attitude. They all have some pretty big challenges in front of them and it would appear as if none of them have any of the small problems that most of us struggle with daily.

So if it feels like you're walking uphill both ways to work every day, go out and find a mountain to climb. I'll bet your daily commute will start to feel like a walk in the park.

Don't Worry, It'll Get Worse

I was wrong in regard to the end of the chemo. Jo got a small dose of chemo today and she'll get a few more small doses on the 13th, the 16th and the 21st. Jo is one of the few people on the floor that still has hair and they want make absolutely sure it falls out!

Actually, the chemo has a different purpose. As Jo's new stem cells start producing white cells, the chemo is used to calm those new white cells. Without the chemo they would start running around like little warriors going crazy wreaking too much havoc on Jo's already beat up insides.

Jo told Dr. Andersson today that her throat is a little scratchy. In his soft, but authoritative European voice he reassured her, "Don't worry, it'll get worse." Unfortunately, everyone "in the know" seems 100% confident that Jo's comfort level will go down before it goes up.

Stay tuned. This movie has started a little slow, but those that have seen it before say the action picks up soon.

Day Zero - Happy (New) Birthday Jo!

Jo received her new stem cells today at about 11am. The entire process took only 5 minutes. When they pulled out the little bag of stem cells I thought for sure they had lost 3/4 of Uncle Eddie's donation. The nurse assured me that what we needed was in the bag.

Jo slept most of the afternoon, but she was up and about by dinner. Over the next 14 days, it is critical that she spend as much time as possible out of her bed while she is awake. Significant amounts of lying down creates an environment for pneumonia to develop. When we stand up or sit up, our lungs expand more when we breath and they stay cleaner and healthier.

The chemo has destroyed Jo's original stem cells, so right now she is not producing many white cells, red cells or platelets. For the first time in several years, Jo received a platelet transfusion today and she'll start getting red cell transfusions soon. White cells do not live long enough outside the host to be transfused. Sometime around Day 14, we expect to see Jo's new stem cells start producing white blood cells.

White cells are pretty important in our daily lives. They are the "helpers" that fight all the bad things that try to attack our bodies and they "fix" all the things that need fixin' as they say in Texas. That's what makes the next 14 days so critical. Without white cells, Jo's body just doesn't have the ability to fight off much of anything.

Looking at Jo right now, it seems like she'll be ready to go home in a day or two. It's hard to believe that is not the truth!

Bed Alert, Bed Alert

Just when I think I've seen it all, Jo gets put on "bed alert". Her bed has been physically alarmed so if she gets up, sirens go off and the nurses come charging in. That probably explains how "out of it" Jo has been today. Dr. Andersson, the attending physician, promised tomorrow will be better.

Jo started anti-rejection drugs today. Yesterday I made it sound like she takes these drugs for just 2 days. She'll actually take some sort of anti-rejection drug every day for the forseeable future.

Chemo Complete

Jo got her 4th and last dose of chemo this morning. We all know somebody that has cancer who maybe had chemo off and on for many months. This is a little different. Jo got 4 hefty doses over 4 days and we hope never to experience chemo again. A cancer patient has cancer cells potentially throughout their body that need to be killed. For the most part, Jo does not. Jo's chemo is designed to attack and kill cells in her body that are actively dividing and multiplying. This is primarily in the bone marrow.

Unfortunately, chemotherapy is a lot like sending a laser guided missile to destroy a weapons factory hidden in the middle of a residential neighborhood. No matter how good the technology, the neighborhood is going to suffer some damage. Jo is starting to feel that now.

I asked the doctor how the chemo knows not to destroy other things like our heart or liver. He said those organs don't have many cells that are actively dividing. Unfortunately, the stomach does. I guess this is why the chemo causes pretty significant nausea.

I asked Jo how to describe her current status. I gave her the options of "slightly unpleasant" or "moderately unpleasant". She smiled and came back with "rather unpleasant". We've seen a lot in the last 6 years including a few times where a smile was physically not possible, so I have to say we are doing pretty good.

Tomorrow and Tuesday Jo will get anti-rejection drugs to get ready for her new Stem Cells on Wednesday. A lot of people have asked for the date of Jo's "surgery". There is no "surgery" involved with any of this. Everything is done through Jo's blood stream.

Wednesday will be referred to as Day 0 as we count the days Jo has lived with her new Stem Cells. Every patient is different and there is no universal magic number, but 100 Days is the goal everybody keeps their eye on. At 100 Days, each patient is considered to have crossed over a fairly significant hump.

Jo - 1, Chemo - 0

Round 1 goes to Jo. She had her first batch of Chemo this morning. When I saw her between 9am and 11am, she felt great. Jo's Nurse Practitioner's name is Tracy and she used to work for Dr. Alvarez back when Jo was first diagnosed 6 years ago. Tracy did say that Jo may not start to have side effects until next week. I'm very happy that she'll be comfortable for this Saturday's BIG Air Force / ARMY football game!

I took the shuttle bus from our apartment to the hospital for the first time last night. Only one other lady was on the bus with me. Her husband had just received his Stem Cells earlier in the day. Believe it or not, they live in Parker, CO...no more than about 15 minutes from us!

Rain Delay

With the World Series ending earlier this week, I'll bet you thought my baseball analogies were over. Not so fast!

It did rain all day in Houston, but that is not what caused the delay. When Jo checked into the hospital last night she had a slight fever. Anna had been sick on Sunday and Monday and Jo more than likely got a little bug from Anna. Jo has gotten antibiotics for the last 24 hours and her chemo has been pushed back to tomorrow.

The schedule for the next 7 days goes like this: 4 days of chemo, 2 days of anti-rejection drugs and then the Stem Cells go in. Right now, Day Zero is expected to be next Wednesday. Day Zero is the day the patient gets the new Stem Cells and many patients refer to Day Zero as their 2nd Birthday.

Extraordinary Greatness

Have you been watching the World Series? Don’t you wish life was like batting practice instead of the real game? In batting practice, your coach throws “cupcakes” right down the middle, you hit almost every one out of the park and all your buddies tell you how awesome you just hit the ball! In the real game, the opposing pitcher throws a curve ball on the outside corner and then a slider high and inside. At that point, you’ve got two choices… 1) go back to the dugout and whine and complain about the terrible pitches you’re getting…or…2) hit the ball out of the park anyway.

On October 1, 1932 in Game 3 of the 1932 World Series, Babe Ruth pointed to the center field bleachers, letting the Chicago Cubs know where he was going to put the next pitch. On the very next pitch, Ruth blasted a 440 foot home run to the deepest part of center field. Jo checks into the hospital tomorrow night and the pitches start coming on Wednesday. As I sit here today, having considered all there is to consider…I’m pointing to the center field bleachers.

We have the very best transplant facility in the world. We have a perfect bone marrow match. We have the absolute best situation for Anna. We have tremendous support from the great city of Denver and dancers all over the world. We have incredible family support. But most of all…we have Jo. Anyone who doesn’t see the next pitch being hit to the center field bleachers just doesn’t know Jo.