Thanks for the bike responses.

Thanks for the bike responses. It sounds like Sue and Barb have bikes, so thanks everyone, but I think I'll be set. Thank you Sue and Barb. How about if I see how much room is at my moms and decide if I think I need to go smaller or if bigger would be ok. Sounds like Barbs is a bit larger, which may be great, I just need to check on the size of the room. Thank you both, I'll check in with you early next week. Legs are pretty tired today, don't want to push it, so it may be a couple of weeks before I actually get on a bike. I think my desires may be bigger than my actual abilities at this point. Call you both soon. Mike

Next stop.....HOME!

Looks like I should be getting a few platelets in the morning, then my discharge orders, and then heading home. Very excited about being home for New Year's Eve and watching the Rose Bowl from my own couch (actually, my mom's couch). Hopefully I won't have to make any return visits to the UW, but if I do, it's really a nice place with very good staff. It's been an amazingly supportive and educational environment. They're very good at what they do. I'm not sure if you all know this, but Fred Hutch does more stem-cell transplants than anywhere else in the world. And, since the Hutch isn't a hospital, all of those are done at the UW Hospital. Great place, great people!

Well, my cells are smoking. WBCs today were 3,020 and the absolute neutrophil count (ANC) was 2,570. Yikes. I think they're kind of surprised, they just look at me an go "Wow." Hopefully that a good 'wow.' Sounds like it is, as noone has told me differently and they're sending me home. Platelets were a bit down at 12,000 so I'll probably get some in the morning. This routine may continue for the next month or so.

Eating is going well and I'm feeling pretty darn good, so except for a kind of 'middle of the day' fatigue, I'm ready to go home. I figure I don't need to be in the hospital to take a nap.

Hey, but I have one question for everyone. I am looking for a stationary exercise bike to BORROW for a month or so. I would never want to take one out from under someone, as I'd hate to think I blew a New Year's resolution. But, I have lost a lot of leg strength and muscle in the last 3 months, so I am going to try and just get my 'bike legs' moving a few times a week. If you have one in the garage, storage, or one you just aren't using, I would love to borrow it. I won't keep it long (end of Jan or early Feb) and I will arrange pick-up and delivery back to you. Just checking, as I really don't want to buy one because I don't think it's something I would use long-term. I don't want to use my bike on the trainer because it takes up too much room and really isn't that comfortable. I also looked into renting one, but I can't find any availability there. Anyway, if someone has one or knows someone who does, that would be great. Also, I don't care at all what type, just something to get my legs moving and heartrate up.

Again, thanks you ALL for your kind words, thoughts, prayers, and support. I get so many emails and I really appreciate it. Love to all and a Happy New Year! Mike

Counts up, possible discharge, and more...

Hello everyone. Thank you so much for all the nice comments and emails about seeing some action on the increasing WBC front. It makes me feel really good that so many people are as excited as I am. Thanks!

It was kind of funny today because I slept great, woke up feeling good, found out my ANC today was 640, and ate a good breakfast. I got going on my morning routine and the 'transition nurse' came in and mentioned that they are talking about me possibly going home "tomorrow or the next day." I thought, huh, yikes, cool...I guess. She mentioned that I have been the "model patient" and "things have gone so well," so getting me home should be possible in the next couple of days. I truly AM excited to go home, so since I have been hearing how well I've been doing for a few days now, I kind of knew that I would not be here until January as I was told earlier.

Later in the day I got visits by the discharge pharmacist and the attending physician. Both say they have written discharge orders and will evaluate things in the morning (I guess meaning if my ANC stays above 500 and I'm eating) my status. So, that got me talking to the transition nurse later in the day, again, on what types of restrictions I will have, and for how long. I thought this might be of interest to everyone because I think it underscores, at least it did for me, how this is truly a year-long battle. They weren't lying when they told me that my recovery will take a full year, no matter how good you feel. The recovery they're talking about all pertains to my immune system and minimizing my chance of getting virus' and bugs. Sharing this info with everyone will also let people know that it's not that I don't like you when I don't shake your hand or am unable to come to a gathering celebrating your birthday.

Facts:
-During the first month home, 50% of hospital re-admissions are due to foodborne illness'.
-And, just under 1/2 of all discharged patients need to be re-admitted at some point to address an infection or evaluate a fever, dehydration, or other concerns.

Things I CANNOT do for 12 months:
-No building construction or home improvement projects - fungal spores (aspergillus)
-Can't sleep with cat on bed or change litter box (toxoplasmosis) - petting, cuddling is ok, but must wash hands after contact, especially if licked
-No cleaning fish tank
-No contact with reptiles, rodents, or birds
-No going to zoos - no, I'm not kidding you
-No gardening, mowing lawn, or raking leaves (tons of bacteria)
-No sitting directly on grass or dirt - again, no I'm not kidding, I need to bring a blanket to sit on
-I can have house plants, but I can't touch them, yet NO fresh cut flowers
-No working in healthcare

Things I CANNOT do for 6 months:
-No swimming or hot tubs
-No public aquariums
-No hunting
-No horesback riding
-No animal trophy mounts in the house

Weird to have all this stuff above that I can't do, but I AM ALLOWED to have close contact, intimacy, cuddling, and kissing with immediate family members - as long as they are not actively sick, so I got that going for me...which is nice. I will really look forward to snuggling up with the boys at night before bed.

Oh, also, all members in a household need to shower daily. We'll be the cleanest family on the block.

Anyway, just thought it would be interesting to see what the year is like for someone post-transplant. Although this sounds kind of crazy, there is a ton I can do. I'll be with my family. Be able to play at the park, work-out, and wrestle with kids. Get to smaller gatherings the first 6 months and enjoy BBQs all summer. By mid Feb, I'll become a certified house-husband. I'm actually looking forward to helping with the cooking, cleaning, getting the kids to school, etc. I'm excited to go to movies with Casey and enjoy the popcorn - they'll just have to be matinees, or a movie noone else wants to go to.

It's all about patience. One year for hopefully many more healthy years, not a bad trade if you ask me. Mike

Something to shout from the rooftops!

ALERT!!! Let it be known that Mike has some white blood cells! After a full seven days of a WBC count at zero, the absolute neutrophil count (ANC) was an even 100 this morning. Come on 500. Platelets stayed steady at 19,000 and red blood count was also good, so no blood products needed today. Had a 1/2 grilled cheese and clam chowder for lunch, so IV nutrition stops at 9 pm tonight. Walking all over the place. And, no fevers yet.

Now I am going to order a milkshake and watch Monday Night Football. Talk to you all soon. Mike

What's in a day?

Well, I didn't really know what to write about today. Since I basically spend my time waiting (for cells to grow) and trying to eat, I didn't have anything specific on my mind. So, I was going to give everyone a rest, then I thought, nah, I'll get something down. I tried to remind myself that in the end this is something "I" will hopefully have to look back on. I'm just going to give a quick update on condition, then describe a little about my routines and surroundings. I have gotten numerous emails asking; "What do you do all day?" "What is your room like?" Since I didn't have any real plan for writing, I thought I would just answer these two questions. So, kind of a simple, and maybe a bit boring subject, but everyday can't feel like Disneyland.

I feel pretty good. I do a lot in the morning, then get a bit tired, lay low in the early afternoon, then usually get another wind around 5:00. No new white blood cell growth yet. As it has been, food is still going down slowly. I am still on the IV nutrition, so at least my weight is back over 150 pounds. I felt like I was wasting away earlier last week. My body is still chewing up platelets. They were very low today,so I got another round. Nausea is almost non-existent, so that is really nice. The problem is that nothing looks good and I feel really full if I eat so much as an almond. Also, my taste sensors are wierd. When I first was admitted, I was excited because they wanted you to drink bottled water. I loved it, gulped it down by the bottle, and thought, what a luxury. Now, I can't even take a sip of the same water. To me, and how weird is this, water tastes like dirt. Taste buds are a bit wacky. I ate some cheddar cheese tonight and I swear it tasted like eggs. Luckily I like eggs, so I actually enjoyed it. They tell me this is all chemo related. Most things will return to normal and a few things will remain different. The biggie for me is NO problems with MS symtoms and no neutropenic fevers...yet. They keep reminding me that only about 20% of people will make it throught unscathed by a fever, so we'll see, maybe I'm a "20%er."

Ok, how about a room layout real quick. I've had emails referring to, "How's prison going?" I think my room is a bit bigger than a prison cell, at least I hope it is. Either way, at least it is private, no sharing a bunk with Bubba. It's 14x11 ft with a nice big bathroom. The room has a sink, mirror and counter area. The bathroom has a shower. And, it's cool because I don't believe it's a low-flow showerhead. And, I'll tell ya, I love the high-flow showerhead. I still remember the high-flow showerhead on our honeymoon in Jamaica. I believe that's the last one I've gotten to enjoy until now. Who would have thought I would have had to have a stem-cell transplant to once again feel the joy of a high-flow showerhead. I probably could have gotten myself one on eBay for $20. Come to think of it, maybe I'll look into that when I get home - just don't tell Mayor Nickels. Oops, sorry, got a bit off track there. Quickly, also have a comfy chair with ottoman, TV, VCR, bedside cabinet, overbed table, and of course, a bed.

How about a quick rundown on what my day's like. I've gotten into a routine that I like because it keeps things moving, but also, and this is very important, attempts to not get my day/night rhythm all screwed up. I usually awake by 5 am, turn on KING FM, stare at the celing for a couple of hours (sometime I doze off again), then get up around 7 am. I brush my teeth, very gently. I refrain from shaving because I try and leave that so I'll have something to look forward to later in the day. I go on a walk. I try and do 4 each day. The floors basically a triangle shape, so you just go around and around. You know, kind of like that tiger you see at the zoo. From each end of the floor there are views of Husky stadium, the Cascade Mts, and Lake Washington. So, that's actully nice, and I'll do some light stretching and gaze out at all the people going about their daily activities. Then, I usually hang out in the chair for a couple of hours. Usually I am reading, listening to books on tape, or watching TV while I get some sort of medication or blood product infused. When "infusion time" is done, I get unhooked from my IV lines for an hour. I get in the shower for about a 1/2 hour - aaaaahhhhhh. I love the shower. They have a rule that you MUST shower EVERYDAY and use two washclothes. Most of the in-hospital infections are from bacteria on your own body - isn't that weird. After the shower I get another nice walk in, without having to push along IV poles. By this time, I'm usually pretty tired, so I hit the bed (freshly made with new linens everyday) and rest for a couple of hours after getting re-attached to my IV pole. Hopefully there's a football or basketball game on to pass the time because I'm not a 'napper' and also want to make sure I sleep at night. Afterwards, I hope for maybe a short visit from someone, or I'll talk on the phone or on Skype. The next few hours are just a juggling of walks, sitting in chair, reading, or anything else I can do to pass the time. I try to get into bed by 8:30 pm, I get medications at 9 and 10 pm, vital signs and blood draw at midnight, Lipids (basically fat through the IV) get started at 3 am, then, vital signs at 5 am. So, you can see why I'm usually up by 5 am and also how getting sleep can be a challenge. I guess nobody comes to the hospital for sleep. I guess I'm lucky in that I've never needed very much sleep, about six hours usually does me fine.

Anyway, sorry, that was way to long. I was planning on a quick 'run down' on my day. I'll stop now...my bad. Talk to all later. Hopefully I'll have something more interesting to say tomorrow. Mike

An update and a feel-good story too.

Hello everyone. I really hope you ALL had a wonderfully memorable Christmas and enjoyed the time you spent with family and friends. What a great time of year. I was able to decorate my windows with holiday window clings. My mom brought me a ceramic Christmas tree that lights up. It's actually one she made while she was pregnant with me. I also have one of those little Santa snow globes and some kid drawings. So, really not too bad. Also, Casey called when her and the kids went downstairs on Christmas morning, so I got to hear how excited they were. That was fun and it'll have to do for this year. I'll look forward to being behind the video camera in 2010.

Unfortunately, Casey is a bit stuffy and Owen has a little cold, so no visits from them yesterday. Had a few other visitors including my mom. But, today, my mom came by again WITH JACK. It was so nice to see him. I miss him (and Owen) so much. I'm supposed to observe a '5 foot rule' with visitors. Not gonna happen with Jack. When it was time to go I gave him a big hug, a long one. Then, I couldn't stand it and gave him another one - one for him to take home to Owen. It's ok that Casey and Owen are being so careful, I really don't want too many people here, but especially anyone who thinks they might be remotely ill or even have been exposed to someone who is sick. It just isn't worth it at this point. I'll see everyone soon enough, probably sooner if I stay healthy.

I'm feeling good. Almost no nausea, which is great. I'm on my 3rd day of slowly trying to increase food intake, and doing pretty well with that. Headache is much less and I'm up and about really anytime I want. So, all in all, going very well.

Really, it's now all about waiting. The window for when you start seeing cell growth varies for all patients. Usually you see white blood cells (the important ones at first are called Absolute Neutrophils) begin to show up between Day +10-17. Tomorrow, Sunday, will be Day +9 for me, so hopefully soon I'll see some action. Then, once WBCs are seen to be growing, they focus in on your Absolute Neutrophil Count (ANC). When this reaches 500, you can go home. That is to say that you don't have any other problems - must be eating, peeing, walking, etc, etc. Even after you leave, you will be seen in the clinc at the Seattle Cancer Care Alliance everyday for awhile and ANY fever will get you re-admited.

On another note, I wanted to mention something else. This is an instance of how you sometimes don't appreciate the importance of something until it happens to you or someone you know. What I'm referrring to are blood product donations. Yesterday and the day before I received some platelets by transfusion and today I needed two units of red blood cells. I've given blood way back, but everytime the blood-drive was at my work, it's not like I made the extra effort to go down and donate. I am absolutely not here to solicit people to run out and donate blood just because I got some today. I just wanted to bring it up in case the opportunity is ever available and convenient to you - it was definitely on my mind today. I think I'm really just wanting to thank anyone who has given blood. Thanks. Each unit of blood goes a long way. When you give blood, you are actually giving three products - Packed Red Blood Cells, Platelets, and Plasma. Each have their own specific use and save lives everyday.

Here's one last story about giving. I've really only met one other patient here. Patients are not really supposed to fraternize. It's kind of 'illegal' to stop in the hall and talk to each other. And, there's absolutely NO going into another patient's room. But, I have met a woman here in her early 50s. I'm going to keep the details to a minimum, but just throw her story your way - because it'll make you smile. Her name is Adelle, she came here for her transplant from another country. She came alone and her family will fly here when she is closer to going home. She has a disease where she needed an allogeneic stem-cell transplant (as opposed to my autologous). In other words, she will get her cells from someone else, a donor. Well, how cool is this. She matched a random donor who is 19 years old. This young kid just gave a blood sample and registered as a bone marrow donor. I wonder how good this person will feel about themselves the rest of their years on this earth knowing they possibly gave someone the ultimate gift - LIFE. I bet it'll feel pretty cool.

Ok, better go and finish the USC bowl game, go Pac-10. My plan is to keep moving, increase my food intake, try and get some sleep, and stay healthy. Then, if the cells graft and do their part, I'll be out of here in no time. By the way, thank you everyone for your kindness. Your comforting words, thoughts, emails, and EVERYTHING else are greatly appreciated!

Love to all, Mike

How about something to talk about?

How about a different kind of post tonight, and then a day off tomorrow. After all, it's Christmas and you should enjoy the day with your friends and family. Maybe even take a nap, that's always nice on a Christmas afternoon. Enjoy that delicious meal, great conversation, and the fleeting moments we all NEED to enjoy before we go our separate ways until the next holiday or special occassion brings us all together again.

Before I started in the HALT-MS study, I got so many of the following questions that I think I have a conversation topic (maybe adults only?) for your after dinner relaxation.

Many people have said the following types of things to me:
"I can't believe you're doing that."
"Thanks for doing this for the rest of us with MS. I could never do it."
"Aren't you scared?"
"What if it doesn't work out well?"
"I would never be able to do something like what you are doing."

So, here's the question for an after dinner conversation sometime during this holiday season.

What would you be willing to do to have a 90% chance of adding many more years to your life by drastically altering the course of an illness you had?

I think we would all be "all in" for a 100% chance, but put that 10% risk in there (because, there's always a risk) and see if it changes your answer. Also, don't even think MS in the equation. Would you do it for insulin dependent diabetes? Progressive coronary artery disease? Lupus? Chronic fatigue? Debilitating migraine headaches? In addition, I think we would all agree that this question pertains to chronic and progressive types of illnesses, not imminent life-threatening conditions such as many cancers and ALS.

Have a great Christmas. I've been giving my boys a big hug in my dreams every night, but I'm looking forward to giving them a big hug in person tomorrow. Mike