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

Day + 5 (aka - 11th day in hospital)

Hi everyone. Hope everyone is doing well, I'm sure you're all busy busy busy with the holidays. I had a good day and just wanted to get something posted as I watch my adopted 'bowl' team, Cal-Berkeley Golden Bears, go up on Utah 14-0 in San Diego - at The Poinsettia Bowl. Boy, what I would give to be in San Diego, one of my favorite cities. I think I've mentioned I'm going to make that my first plane flight (when I can fly) to take Owen to visit SeaWorld.

Anyway, as I said, a good day. Still continuing with "the usual suspects." By that I mean slight nausea, low-grade headache, and a lack of energy. I went to the mirror this morning to brush my teeth, kind of turned around as I was brushing, and when I looked back at my pillow, I noticed dirt on it. I thought, they change those every day, what's up with the dirt. It wasn't dirt, it was hair. I got my hair cut pretty short about 12 days ago before coming in, but as hair tends to do, it has grown a bit. They told me I should expect hair to start falling out on around Day +7, but even though today was Day +5, it was obvious that I was just a bit early. I was able to easily pull out more, so I asked the nurse if they had a razor since I didn't want little hairs all over the place throughout the next couple of days. So, before my shower, I got another haircut, this time all the way down. Casey thought I looked cute, so since that's the only person who matters to me, I'm all good with the bald head.

I had a short visit from my mom and a longer visit from Casey. Very very nice. I've seen my mom the last three days (I think), but hadn't seen Casey for well over a week. I'm not sure I've seen her since admit day? Of course we did talk, but we wouldn't have had to, just having her in the room was beautiful. I wish she could climb in bed with me and snuggle under a blanket and watch a Harry Potter movie. As David Carradine would say, "Soon my son, be patient." Thank you grasshopper. By the way, I should mention that all the staff here told me after she left how beautiful my wife is. I'm like, duhhhhh. Then, after thinking about it a minute, I think they meant, 'you lucky SOB, how'd you do that?'

I ate a popsicle today (a whole one), a glass of grape juice and a can of gatorade.

It was my first day of platelet tranfusions. This is no big deal, and I know there will be a few more. They tell me noone get through a transplant without platelet tranfusions. I was warned earlier in the week to make sure I was using an electric razor and not to blow or pick my nose. Luckily, I was already complying on all accounts.

The thing that's key now is to just wait and wait until you see signs of your 'counts coming in.' This is also know as the beginning of engraftment. I was given back a very selected sample of my cells (nothing by CD34 stem cells, no other white blood cells at all), so I am going to be a few days behind someone who normally has an autologous stem-cell transplant. Of course, they're at zero now, but I might see some slightly positive numbers on or about Day +9 or 10. If all goes well, engraftment will start in earnest between Day +11 and 13. Might be a little long in some people. But, as with the hair loss, I'm predicting I'm going to be an early 'grower.'

Lastly, I asked them when I'm out of the woods as far as fevers go. For example, many transplant patients get "neutropenic" fevers anytime from when counts are at zero to a few days after the graft starts coming in. I'm not sure if you all know, but fevers are NOT good for people with MS, I think I've had maybe two in the two years since diagnosis, and I can attest to how bad you feel. You truly get an exacerbation of your symptoms with, for me, quite profound weakness. I wanted to know what percentage DON'T get the neutropenic fever at some point or another. The doctor said, "Well, the lucky ones are the 20% who don't get them." After doing some quick math, I deducted that I had about an 80% change of having a problem with this. So, I'm not really looking forward to that possibility. Anyone who has MS out there (or lives with someone who does) knows that you'd probably rather get mauled by a tiger than have a prolonged fever. Oh well, that could be a week or more away, no use worrying about that now. Maybe I'll worry about the fever thing when I get past the hurdle of actually eating solid food.

I can't believe tomorrow is Christmas Eve. WOW, time flies. Enjoy your Christmas Eve festivities everyone. Talk to you soon. Mike

In addition, by the end of writing this, Cal is now behind 17-14.

Imagine being visited by three spirits...well, I was.

What if someone asked you to "think about, and deeply imagine, your body being at the most fatigued it could possibly be?" How far could you go? What do you think you would feel like at your lowest? I'm thinking of low like if you went to Death Valley, CA and dug down another 10 feet. Do you think you could imagine fatigue where you were laying on your side in bed, wanted to pull up a blanket that was just out of reach at the end of your bed, but didn't feel you could sit up a little bit, reach your arm down to get it, pull it up, and flop your head back down on your pillow? Even with the MS flares I've had in the past, I'm a person who goes and goes, at most, I have to slow down a bit, so what? I could have never imagined the level of fatigue I felt yesterday. In fact, if you explained it to me in complete detail and even told me that, "No, Mike, I promise you, I've seen it." I still wouldn't be able to conceptualize such profound, debilitating and all-encompassing fatigue. Is all I can say is, now I know, and today is better.

That being said you can probably tell that yesterday was not one of my better days. I'm not sure if it was that yesterday, 12/21/2009 (or Day +3) was the day my white blood counts hit zero. Imagine, immunity gone, just like that. Or, maybe it was that I had some of the worst stomach pains that I've ever experienced. They have ruled out Pancreatitis, and as usual, just blame it on the chemo - which is fine, it's better than the former. Adding low grade nausea with occassionally throwing up is a bit zapping too. But, I also have maybe eaten 5 pieces of food since last Tues - I usually eat two pints of ice cream per night. Remember, I didn't come in with a lot of reserves to play with. I entered at 161 lbs and today officially weighed in at 147! And, believe me, I look all of that 147, as I think most of what I lost was muscle. They give you every chance to eat on your own, they really want YOU to do it, but gave in and started IV 'food' last night. It's about time, I guess my body is just not equipped for starvation.

This brings me to what really, truly got me through yesterday. But, before I get into those events exactly, I must mention that whether they appear in writing or not, my wife and children are ALWAYS what get me through each day. I was thinking a couple of days ago, "What do I actually fear?" I sat there awhile, thought about it, and ran through some possibilities. It really didn't take me long to come to the conclusion that I don't really fear anything, except one thing...not having my wife and sons in my life. So, if they don't constantly appear in my words, everyone should know that if there were 25 hours in the day, I'd be thinking about them during that extra hour too. I love you Casey, Jack and Owen!

Keeping in step with the holidays, I must say what helped me get through yesterday was a visit by three spirits. Now, we all know they weren't real spirits, I'm not that out of it, they were three people. Yet, these were three people somehow strategically placed in my day when I needed it most. First, it was 12:30 pm (I think) and I hadn't been out of bed yet. It was dark and the door opened. A voice said, "Hi Mike, it's Bill Herzog." I hadn't moved in 2 hours, and I wasn't sleeping, it was just that I couldn't even lift my arm to get that blanket I struggled so mightily for earlier. Bill walked across the room and sat down, I immediately propped my head up with my hand, was able to smile, and enjoyed talking without stopping for about 20 minutes. I feel like this jump-started my day. Bill, please know how grateful I am that you choose this day, at this time, to stop by. Bill is the father of John, whom I went to Prep with. I still see John a few times per year, but it may have been 10 years since I've seen Bill. Bill's house in Montlake was the house in high school that you could hang out at, unjudged, yet safe and with appropriate counsel (and a hot meal) always at the ready. Remember this was 25 years ago, yet this same feeling came rushing back to me when I saw Bill Herzog. Plus, he knows just what to say. Thanks Bill.

Secondly, it was just about dinner time, that would be if one actually ate dinner, which I don't. So, I guess it was about 4:30 pm. Also, I'm still in bed, but, I've progressed, because I'm actually 'thinking' about sitting up to rinse my mouth. All of the sudden my mom walks in, spirit #2. I haven't seen her since coming in to the UW because she had been traveling and we thought maybe she got a cold on the plane, etc. It was sooooo nice to see her! It was exactly what I needed. I won't go into to much detail here, but just know that it was a wonderful visit; a few tears were shed (which I/we needed to do) and she showed me my Christmas present early. Ha ha Jack and Owen.

Thirdly, my mom said my brother was on the way to "Just sit and watch some football." I wasn't sure I was up to it, so I thought, well, I'll call him and let him know if he's not left home yet, that "I'm doing ok, let's do it another night." He was already driving and almost here, and I'm glad I got to see him - spirit #3. We really don't have to say much to enjoy each others' company. So, we talked a bit about how I was doing, then moved on to many other pleasantly mundane topics, which was very nice. We watched the end of a terrible Monday Night Football game, but it didn't even matter. Paul let's me see the future, as in things can (and will) get back to normal when all this process completes sometime next year. After the visit, there was a "See you later," and a "Hang in there man," and spirit #3 was closing the door behind him.

So, I got to share some old memories with Bill, shed a few tears with my mom, and forget about it all and talk about how much the Seahawks suck with Paul. I think these were the spirits of the past, present, and future. Not bad for a bad day. Then, I was able to smile, take my Zofran and Ativan and look forward to a better day tomorrow - which it is.

All that being said, I need to mention that I was also visited by Steve Bronson, but he's not a spirit, he's actually in the best-friend category, and he visited twice - coming and going to work. He works at UW on the coronary care floor, so I just wanted to make sure that everyone knows 'spirit' status is reserved for the unexpected. I know I can count on Steve each morning he works, in fact I saw him a couple of hours ago. Thanks Steve.

I'll look forward to chatting again soon. Love to all. Mike

Not pancreatitus! (I'm a phonetic speller)

After talking with Mike I learned that they now think he doesn't have the pancreas thing. Now they think that he has mucousus (another one I am not sure I have correctly) which is, again use your patience here as I attempt to explain this and probably get wrong, the sores and such you get normally in your mouth. What I understood is that Mike has taken really good care of his mouth (they give meds and a cleaning routine) but perhaps somehow it has gone into his digestive tract. They will give him IV nutrients, and meds. His stomach seemed to be not painful hurting this evening, just back to the mild "full" feeling with nausea. Who thought that would be good news? I felt relieved that the pain in his tummy seemed calmed.

He also enjoyed visits from Steve, Bill Herzog, his mom, and Paul, his brother. Probably exhasting to get so many visitors, but I could tell it really perked him up. Thanks to you all!

Day 3 Do you know what your pancreas does?

Hi It's Monday, Day 3. For us, it has been like living in bizarro world - going about our business, making dinner, getting ready for the holiday, writing Christmas cards. It sometimes is difficult to process the whole thing. And there Mike is so courageous and strong, while I'm worrying about what to have for dinner. Mike had a rough night last night, with strong stomach pain. He said it was the worst pain he's ever experienced. The only thing I figure I can even liken it to is having contractions, so I try to remember how awful those were. It turns out Mike has pancreatitis ( I hope I spelled that correctly!). He is off food, fluids only, and is on some pain meds which I hope are helping to ease his pain and let him sleep so he can forget about it. I feel nervous about going to visit because, though I don't feel sick, there's always that little bit of something that makes you worried you're one day shy of a huge stuffy nose or something. I couldn't forgive myself if I passed something on to you Mike! I am hoping to get another day or so away from the "three school trifecta" of germ infusion here at home so that I can get over there. And I know the boys really want to also, although I can see that that visit will last all of 10 minutes before it turns into boys wanting to jump on the bed or chase each other up and down the hall.
Any messages you have to send to Mike are welcomed! As I said before, we read and listen to every single one.
Hmmm.... in the news? I don't think I've heard the news in a few days, although I guess I did read the Sunday paper yesterday, but somehow I can't remember a thing from it. Letsee.... they are choosing someone new for something on the Seahawks. Oh! That actress from Clueless died (Brittany something?) But I only know that because Pam told me. :) Jack got to go to a cookie party today at his friend's house (Thank you Leif!), and Owen got to play with Armida. Mama had alone time with her friend Kate! (Thank you Kate!). And we love Mike! Hang in there pumpkin!

Welcome to reality Mike.

By the title of this post I mean that I think the reality of this difficult path I/we have chosen is hitting home. I didn't even realize that I didn't write something yesterday. I know yesterday (Sat) was the first day I really felt pretty crappy, so I guess I didn't feel like writing anything. I guess my hope of writing something everyday for the first month or so is not totally realistic. There may be some days that Casey needs to fill in the blanks and add her two-cents worth. I woke up today with aweful fatigue (like, the whole body, all the way down to fingertips). Of course this is normal I've been reminded, along with the eating troubles, and a variety of other discomforts.

Anyway, my big complaints now have to do with fatigue and my stomach. As far as the fatigue, I'm just trying not take it easy, but not succumb to 'the bed.' I've kept up with my 5 or 6 walks today and tried to hang out in the chair. I've been told that this could not only worsen, but go on awhile. A nice nurse today mentioned that fatigue lasts up to a year - thanks. I did actually ask the doctor, and he confirmed that the fatigue can be pretty profound and can "last quite a while." Well, that "may" happen for some people, I won't be limited by 'fatigue' a year out, I'll promise you that.

That brings me to the appetite thing. I can't believe how I just don't want to eat anything. I had some cheerios today and grape juice, but it's going to be all I can do to think of ordering something for dinner. My weight is already down a few pounds, and I didn't have a lot of weight to spare. I hope this gets better over the next few days, but I guess if it doesn't, then I'll have some IV nutrition to look forward to. Boy o boy, what do you say, except, it's always something.

Although there are staff and patients around here, you're kind of on your own, and it's getting a bit lonely. Hopefully, Casey or my mom will feel good enough in the next couple of days to pay an 'in person' visit. They obviously don't want you her if you have ANY kind of cold or bug. Steve has visited on his way to work a couple of times, so that's been nice. My blood counts are close to zero, so there ain't no protection there. The lack of human contact is tough, but part of the deal. I was pretty isolated the last month before coming in here since we knew that if I got another rhinovirus, the study most likely would have not been available to me. So, I think I just feel it more because the lack of human contact thing has been going on long before my admission to the UW.

On another note, I was thinking today how much I am going to enjoy next Christmas. Casey and Jack went to White Christmas last night, my friend Carol sent me a pix of how pretty our house looks with all the lights, and Casey and the boys are going to a holiday program at St. Benedict's tonight (Angela's performing). Missing all these things, and knowing I'll be here for Christmas, is tough, but, boy is next Christmas going to be fun - and appreciated!

Talk to you all soon. By the way, I love you all, but Casey, Jack and Owen, I love you very very very very very very very very very much!! Kisses, Dad

Mike

Stem-cells received...Now it's a waiting game.

I'll start with the good news. Got my stem-cells back today at 2:30 pm. You don't feel anything and it goes very quickly. Just three very small bags of clear liquid. Mine were different from what other people get because they were the ultimately small CD34 selected cells. That means absolutely NO other mature white blood cells. The CD34 cells are the precursor to every other cell in your bone marrow. These little guys are the very beginning of everything. This means that my graft may come in a few days slower to start, then not truly be a fully funtioning immune system of up to a year. This doesn't mean I won't have good protection from things at 6ish months, just that it's about a year until all things are back up to normal levels.

I did feel kind of crappy today, which is to be expected. The chemo catches up with everybody eventually. So, I'm happy I tolerated it's actual infusion well, but the side effects are going to come in some form eventually. Basically, a bit nauseated with lack of appetite, poopin' a bit more if you know what I mean, a pretty constant dull headache, and a bit of fatigue setting in as my red blood cell counts slips below '30.' Of course the RBCs carry the oxygen to your body, so the fatigue is from getting less oxygen. Platelets are hanging in there, but everybody needs platelet infusions eventually, so I probably got 5ish days left before they plummet. I did have 1/2 a turkey sandwich today and kept it down, so I think I'll try something small for dinner too.

And, the kids (and Casey) are out of school for the Christmas break. Always something both kids and teachers look forward to. A couple of weeks to decompress, enjoy the holidays, and get your teaching/learning levels back up. It was so nice since 2003 to have this time off from my work each year (we always closed the day before Christmas through New Years) to spend with the family. I, again, hope you all have a successful run-up to your holidays.

Mike

Chemo's done...stem-cells tomorrow.

Finished chemo, today went well, eating dinner (a slow and bland one, but dinner nonetheless), Survivor is on...a reason to celebrate, AND stem-cells tomorrow around 4:00 pm. Mike

Final day of chemo.

When I express how excited I am that this is my final day of chemo, I get looks from the MDs and ARNPs, etc, like "You do know that this is just a start to much of the discomfort...don't you." I just say, yeah, yeah, that 's what I've heard, but why think about that now. They go on to make sure I understand that in the next couple of weeks (post-chemo) I should expect mouth pain, skin issues (you know, rashes, etc), a lot of fatigue, some bone aching when your graft comes in, neutropenic fevers, possible re-admisson for infections, etc, etc. That's all understood I told them, but I'm going to enjoy today being my last day of chemo, and I'll pile on the rest of that stuff when it comes. At that point they just smile at me and tell me how well I'm doing.

I took a nice shower this morning, went on a walk and got a visit from Steve (Bronson - he's a nurse here on the 5th floor). Another day with an excellent nurse - Duane. I am very impressed by their skill level and knowledge. I actually ate some oatmeal and 1/2 yogurt, so that's a good sign. Now I just started my Melpholen (next to last chemo). This is a real culprit in the mouth sore department in the next week or so. It's interesting because while you're getting this infusion, they have you eat ice, popsicles, and italian ice for 1/2 hour prior and 4 hours afterward. Why you do this is pretty cool. Studies have showed that while you're taking Melpholen, if you constrict the blood flow in the mouth by eating cold items constantly, not as much of the drug gets to the oral mucosa due lack of blood flow. With the result being, less painful mouth sore problems since not as much of the chemo gets to your mouth. Pretty cool if it works, I'm all for less mouth pain with this experience. I'll keep you posted on how well it worked.

Next up today is my LAST chemo. Unfortunately, it feels like the monster under your bed. You know, the one you were really, really afraid of when you were 5 years old. I think my problem is that I've actually seen this monster. As you can probably tell, my last dose of ATG is following the Melpholen. The only thing I'm feeling good about is that I'm fighting with my eyes wide open on what this monster looks like, it won't surprise me this time. By knowing that, I feel like I've got the upper hand. So, I accept that it's gonna suck for 6 hours, but that I will win another round with Mr. ATG.

And, tomorrow is Day 0. This is a big day around here. It's the day you get your stem-cells back. People who are battling Leukemia, multiple myeloma, and lymphoma, you know truly aweful diseases, call this their "second birthday." I'm not sure I've really earned the right to claim it as my 2nd birthday as people who have battled these aweful cancers, but it is still exciting to be getting your stem-cells back. From what they tell me, it's totally anticlimactic, takes about 30 mins and you smell like garlic for 2 days (due to the DMSO that it's stored in). So, whether I consider it a 2nd birthday or not, there's no quesion there will be a big party (as Casey mentioned, thanks pumpkin) next year on this day - Sat, Dec 18th, 2010. Stay tuned.

Ok, let me step outside the hospital for a minute. That's enough about me for today. I just want to throw the best holiday wishes out there to everybody. I hope all is going well for you and your families during these very busy days. Just remember to not worry about missing a gift for someone, but be more concerned about missing a visit or a smile. It's all about perspective. I've often told Casey that I think we should go a year with Christmas where gifts are only given to children under 15. The over-15 crowd should, just once, try a Christmas full of cards, phone calls, get togethers, dinners, gift-certificates for 'time' (like dinner and a movie), long walks, setting up 30 minutes drop-bys for some chat and a drink, and so many other ideas that would fulfill a less material christmas. And, when gifts are given, think of giving the gift of time. For example: I would get my mom a gift cert for a cooking class that I would do with her. I would get Paul Mariners tickets with dinner and beers at the Pyramid brewery. I would get Casey a 'couples' spa day and lunch while the kids were with a babysitter. I would get Carol passes to a movie (for us) and I'd buy the popcorn. These gifts of time are amazing. Casey and I have tried to do more of these the last few years, and it's been great. That being said, I think all kids should still get fun and exciting gifts, so I'm not dissing the kids here.

Well, 30 mins till ATG, so I better hit the bathroom and get in bed. YeeeeHawwww. Love to all and I look forward to talking with you soon. Mike

Ah, so this is what they're talking about.

There is one good thing that came out of this day. I'll never have to wonder what it would feel like to be hit, run over, and dragged under a bus for ten miles. So, I got that going for me, which is nice. Let me first get out there that I DID sleep last night. Felt great! Of course, it didn't hurt to have a little help from my new freinds, Ativan and Ambien. In fact, after how the rest of the day went, I kind of wish I had just been able to sleep through Dec 16th.

Today is the last day (of four) for the Etoposide (VP-16) and Ara-C (Cytarabine). And, I must say that I don't think it was nearly as bad as I thought it would be. I had those from 8am-12pm and again now from 8pm-12am. Then, no mas, as in none tomorrow. I tolerated the first three chemos pretty well and except for some loss of appetite and headache, I have think I did better than most people do.

The kicker is another drug added today (one that I will take tomorrow also). This drug comes in and completely depletes any remaining T-cells (a type of white blood cell). The T-cells are the problem in MS, they're the ones that have been turned on you to attack the myelin sheath around your nerves. I was warned that this drug, called ATG (Anti-Thymoglobulin) would give you flu-like symptoms. In my opinion, they slightly underestimated that, as I think they should have said, "Your will experience extremely aweful and uncomfortable flu-like symptoms that will make you want to jump out of the window of you room." Now, if they had 'pre-educated' me with this more accurate version, then I feel I would have actually known what to expect.

They are wonderful nurses and doctors and they truly try and make you as comfortable as they can. They pre-medicated me with IV Benadryl, IV steroids, Zorfan (nausea), Tylenol, and Ativan (sedation). When they gave me all this I was sitting in the chair reading a magazine, then after about 5 mins, I couldn't even make out the words. It was all one blurr, as was the TV when I turned it on. At this point, I thought maybe it would be a good time to get into bed before they started the ATG.

The ATG came about 30 mins later to try and give me some time for the pre-medications to work. I'll shorten this up a bit because I don't think I want to relive all the gorey details so close to the actual event. The ATG ran over 6 hours, during which time I required more Tylenol, Ativan, Steroids, and even some Demerol. Basically, I spent 3-4 hours with very a high fever, shivering cold, yet boiling up, lying in the fetal position' a pounding headache, and gut-grinding nausea. Although I didn't actually throw-up until I got the Demerol.

The 'trip' ended about 6pm and I began clearing and feeling better over the next 30 mins. Decided to call Casey and say goodnight to kids and Skyped Dale down in Arizona at 6:30. Asked the nurse to unhook my IV for 30 mins and I took a shower and a walk, then actually ate cheese, crackers, and applesauce (first food of the day). I'm on my last dose of Ara-C and VP-16 now (yippee), yet, unfortunately, have one more dose of ATG to look forward to tomorrow. At least I'll know what to expect. :)

In the news: I have no 'in the new's today, as I saw nothing but my blanket pillow, and stomach as I was curled up in the fetal position. Maybe tomorrow.

All that being said, overall I'm doing well. I just keep reminding myself that it could always be worse and there are always people in a more painful and desperated place in life than you are. So, no whining here, the upside to this little bit of pain/discomfort is what I have in my sights. That upside is more time with my wife, kids, family, and friends. And, I'm so confident that I'll get there that in my mind I can see it in the distance as clear as day.

Love to all. Mike

Casey's Update Wednesday

Hi everyone! It's Casey. I have finally managed to chime in since, for some reason, I have a spare 5 minutes. I spoke with Mike earlier this evening and today the whole thing was a lot more like what they made it out to be - flu symptoms, none of which sound like a walk in the park. But, when I spoke with him, he felt stabilized at least. He was able to get some sleep last night. The next days will be tough. Tomorrow will be day -1, meaning it will be his last day of chemo, and then Friday is day ZERO. As I mentioned to some of you - consider this your "Save the Date" card for Mike's 1 year anniversary blow out 2010!

Wow, it is really raining. I can tell our cat misses Mike. He's waiting for Mike to come home. Since Mike is his favorite, Kramer (our cat) always cuddles with him. Now, however, I guess Kramer is taking sloppy seconds. He's sitting on my lap as I type.

BHVC (Mike's work and second family) sent him some of those gel letters to put up on his window, and he really likes them. He said he put them up this morning right after he received them. Thank you!

It seems my creativity for writing at this time matches my capacity for thought - not so much. However, I would like to end with our goings-on and also a thank you.
Goings on: Owen's last day before vacation is tomorrow, and he will have a party with a pinata (though he never wants to hit is). Jack worked on Kenyan baskets today, and tomorrow will do a ceramics project. I have just been going to work, though also trying to sneak in a few holiday jobs as well.
Thank you: We truly are thankful for all the words of kindness, prayers, and continued support that you all have given. Please know that though I am behind on responding to everyone, I have read it all - the emails, posts, and cards. In fact, I re-read many of them, but not out loud, because it makes me cry.
Well, off I go for my "nighttime jobs" as we call them. Adios todos! Casey

Goals are not all they're cracked up to be.

I struggled with 2 goals today, either to get some sleep or be able to eat something. [Note: this may be my last 'goal' review, as I'm quickly understanding that I'm not in much control here] Considering I don't feel like eating ANYTHING, I thought I would try the sleep goal since I thought this one would be the most attainable. So, at about 1:30 this afternoon, I decided to try and take a nap. Instead, I stared at my digital picture frame for 2 1/2 hours - goal not realized. Although, I sure enjoyed watching all the pictures go by. I have such a great family and awesome friends so it was nice to visit with them. My digital picture frame has about 800 pictures on it, so it's pretty cool to look at visions of my past AND FUTURE. Holidays, vacations, pets, fun, laughter, friends, birthdays, my absolutely beautiful wife, and two sweet little boys that I would do anything for! So, in the end, no sleep, but I sure smiled a lot and was able to put into perspective how lucky I am.

So, that left me with the other possible goal - eat something today. By last night I realized my appetite was going down the drain. I don't really feel nauseated at all, just absolutely NOT hungry one bit. This is very strange for me, as I can't recall passing up a meal very often. Well, I'm happy to report that Goal #2 was a success. About 1/2 hour ago (5:45 pm) I ate 2 crackers, an applesauce, and a can of 7-up. Well done I said to myself, but I also told myself to take each day as it comes and put the 'goal' thing on the shelf. There'll be plenty of time for that later. So, no more 'goal' talk, I'll just check in with you all and let you know how Casey, myself and the boys are doing.

The above two paragraphs probably are giving you some insight to the fact the "I'm beginning to feel it." Headache, no appetite, some weakness, very tired (but can't sleep) and mentally realizing how long the next month is going to be. But, I have to keep looking at my digital picture frame and remind myself that it could be worse, at least I'm not throwing up and I don't have a rash. We'll see how the end of the week treats me, but it sounds like the next two days of Thymoglobulin (ATG) and then Melpholen on Thurs are going to ratchet this discomfort thing up a bit. Either Casey of I will keep you posted.

In the news: Jake Locker is back for senior season, Mariners get Cliff Lee in a trade with the Phillies, and Joe Lieberman is still a moron.

Take care everyone. Mike

Day 3 - aka Day - 4 (that's Day 'minus' 4)

Well, here we are on Day 3 since admitting to the UW. Here they refer to it as Day - 4. Which, I think I've mentioned this somewhere before, means that after four more days you will receive your stored stem-cells back. That day becomes Day 0 and you count forward from then on. For the next few days I will have the same routine, it's really exciting - wake up around 7:30 am, chemo from 8-11 am, shower, walk, lunch, sit in chair to read (or whatever), walk some more, sit in chair or take nap, dinner, chemo from 8-11 pm, sleeping pill, bed, labwork at 1 am, and then a vital sign check at 5 am. Oh, and there's some oral medications thrown in around the mealtimes. Not quite a Hawaiian vacation, but not as bad as I'd expected, at least not yet.

Three things are making this experience actually pretty good so far. First, I have not been nauseated or thrown up yet. They can't quite understand this, but for now, I'm just glad I'm one of the lucky ones. The first days chemo was called Carmustine, and it's notorious for nausea and vomiting. I had a cheesburger and pasta w/ cheesecake for dinner that night. We'll see how long I stay 'nausea free.' The second thing is that I have an awesome nurse. And, I mean awesome. She is so smart, friendly, and educational. The thing I was thinking about today with her, name is Barb, is that I hope my patients think I'm as good a nurse as her. But, she works 3-12 hours shifts on Sat, Sun, and Mon, so she'll be off all week. Maybe I'll get as lucky again. And, thirdly, having Casey visit last night was great. We ate dinner, chatted, watched football, and went for a walk around the triangle. The floor I'm on is shaped like a triangle and if you're wondering, 15 laps is a mile.

Since there's the potential to do a lot of @ss sitting and watching TV around here, I decided that I would give myself a goal each day. You know, something to strive for, kind of like a challenge for myself. I spent all Saturday and Sunday watching football and basketball (and I mean ALL day), so I thought, not a good habit to get into. Since the chemo kind of makes your head go a little fuzzy (so I've been told) for a few months, I figure there's no sense in accelerating the effect by watching TV all day. So, I decided after my weekend of chemo and all day sports, I would set my goal for Day - 4 as, "No TV until Monday Night Football at 5:30." This seemed like an admirable goal, and I have to say, one which noone else around here probably did. Well, it's almost 5 pm and I am proud to say that I have not watched TV today. Only enjoyed my above mentioned schedule, along with some nice classical music, a TIME magazine (every page of it) and a book on the National Parks (me and Diane's favorite book). So, like G.W. said, "Mission Accomplished." I guess my goal for tonight will be to think of a goal for tomorrow.

Anyway, it's just after 5:00, so I should order my dinner and get ready for Monday Night Football. I'm with Dale, go Arizona Cardinals. Since the Seahawks are so bad, I've decided that it is my duty to at least jump on the bandwagon of another team in our division. Have a good night everyone.

In the news: I don't really have any 'in the news,' since I didn't watch TV or read a paper today, but I would like to make a political statement about something (hopefully I won't offend anyone from Connecticut). What is wrong with Joe Lieberman. Do you know that this numbskull did an interview with the Connecticut Post newspaper in September and he had an idea - he suggested giving people 55 and older "An option to buy into Medicare early if they were laid off or couldn't otherwise get affordable coverage." He said this, look it up, but now he's worried about the increased spending and "Just can't with a clear conscience allow this to happen." WHAT!? This guy is the poster boy for non-partisan inefficiency. If Connecticut re-elects him, I will think so little of the state, that I will re-think my desire to go there and view the fall colors someday.

Take care everyone, Mike

Day #2

Hello all;

Firstly (is firstly a real word?), I want to thank EVERYONE for the wonderful support via all the great communication modes of the 21st century. I've gotten phone calls, texts, emails, video phone messages, and Skype calls. I'm just waiting for the Hogwart's Owl or a homing pigeon to come through the window. I'm very appreciated for the support you all have shown, if I don't say thank you enough, just know that I smile every night as I get ready for bed and recount how lucky I am to have such caring and thoughtful family and friends.

I have found out that you just don't get much sleep around here. Vital signs are mandatory every 4 hours. Also, I have oral medications 2x/day, IV antibiotics 2x/day, IV hydration all day, and chemo 1-2 x/day. Throw in the blood draws (at 1:00 am) and the PA, ARNP, and MD visits, and it's kind of busy. I'm really not complaining here, because it's more human contact than I've had for the last month. It's more the noises and the lights that make it tough.

This morning I got my chemo pre-meds and usual morning medications. They have you on pills that are anti-bacterial, anti-viral, and anti-fungal. I will be on these three drugs for 3 months, or until my 'counts' show that my body could fight off something I get. I have two chemos going right now - Cytarabine and Ara-C (yesterday I had Carmustine and I won't get that one again). Also have the Vancomycin antibiotic going. Fun, fun, fun.

Luckily, I feel pretty good. You can "feel" that something's going on, but I am able to get up and around, eat, and watch football. I guess you can't ask for more than that. They don't wait until you have nausea or pain, they work on the assumption that 'you will' have nausea and/or pain, so they premedicate for everything and so far I'm feeling good. My two nurses have been wonderful. Seeing them work, their education knowledge, and attention to detail makes me feel very good about my own profession. I can only hope that my patients go home and recount the same feelings about the care I provided. As everyone knows, you can gain a great amount of perspective by being 'on the other side.'

Well, good luck in all your holiday preparations. Talk to you soon. MIKE

In the news: Jack Kearny had a morning indoor soccer game. His team lost 7-4. Yet, Jack played goalie in the second half and only one of the goals was scored on him. Good job Jack! Also in the news, the Seahawks are pathetic and Seattle is expecting snow sometime over the next couple of days (it'll be pretty to watch).

p.s. How cool, I have THREE 'followers' - yippeeeee.

Admitted to the UW today

Casey and I arrived at the UW today. I should start 1st round of chemo early this afternoon. So far, just a lot of orientation, blood work, xrays, IV fluids, antibiotics, etc. Casey left to get back with kids. We're trying to keep things as normal as possible...yeah right. Got my hair cut last night. Probably funny for the kids to see. It's definitely shorter than I've ever had it - well, at least since I was born I guess. Just got done 'Skyping' the kids before Jack goes to a birthday party - what an awesome thing to have. That is really going to help.

I'll give you a little education about the transplant thing. They call your first day in the hospital, "minus 6." That is the day you start chemo. The days count down to "minus 1," until you get to day "zero." Basically, -6 to -1 are your "conditioning" (aka - chemo+). Then, day "zero," is the day you get your stem cells back. From day "zero," you start counting up from there. Day "plus 11" is approx when your bone marrow 'graft' starts coming in. This will be a good day when you can track your blood counts returning, and increasing. Optimistically, I could possibly go home on day "plus 21 to 23." That date is around Jan 10th/11th. That's it for my education for the day. I don't have much yet, but you know I will :).

In the news: Tiger Woods will take a break from golf, "indefinitely" - what a moron.

Mike

Admitting tomorrow (Sat 12/12) to UW

I have spent the week on IV antibiotics at home with daily dressing changes to my IV catheter site in the chest area. It looks good, or so they tell me. So...I had a 'clinic' appt this morning and have been cleared for take off. I will be admitting to the UW hospital, floor 8NE at 8:00 am tomorrow (this is Fri, so that means Sat). I would like to say there is some excitement, but I think it is just more of a relief to be done with the waiting and wondering. Let the adventure begin. Sounds like the first 4-5 days are ok, but then it can all get pretty uncomfortable for people. We'll just have to see. Sounds like the bad drug is coming on day 5 and 6. This is a medication called ATG (Thymoglobulin). It is the final kick in the butt for my bone marrow. It follows the chemo and basically wipes out any T-cells (the bad guys in MS, a type of white blood cell) that are hanging on for dear life. These few days I should expect a really bad case of the flu (so I've been told) with fevers, joint pain, fatigue, nausea and a case of increased blood pressure just for good measure.

Casey is going to help with posting things too and also following up with any questions or comments. So, when you write something, please say hi to her also as, depending on how I feel, she may be writing a lot of the posts.

So, as Tom Petty said, "The wa-ai-ting is the hardest part." Now that it's over with it's time to get going. First thing is a haircut tonight. Not sure if Bronson or Casey are going to cut off the hair, but either way it'll be fun for the kids. I haven't had a haircut in over 3 months, so they're going to have some fun.

Talk to you all soon. Love to everyone and thanks for your support of myself, but more importantly, my awesome wife and kids. Any to the 'guys,' sorry to be missing the get together on Wed. Have a beer for me and I'll see you at the next one. :) Mike

In the news: Mike gets 'go' for beginning his stem-cell transplant.

Admit day has now come and gone...again.

Note: if you're reading this blog then I HAVE started on the study. I HAVE been admitted to the hospital and began treatment. I am NOT going to send this URL to family and friends until this thing actually gets off the ground. I know this means that people may have a few backlogged entries to go back and read (if they wish), but at least they won't be reading them for no reason. I just don't have the stomach to send this link out and tehn have to send out an email one or two weeks later mentioning that it ain't happening.

So, anyway, I went in Mon morning (yesterday) to the SCCA. They went over everything for the admission the next day (today) at 8:30 am. You know, what to bring, what to expect, where to go, etc. Then, near the end of the appt, they did the "line check." This is just taking a peek at my central line (the IV catheter in my chest) site. Well, that's where the train stopped! It is a bit red and had a little crust on it. Here's how it goes after that - no admit tomorrow, culture done of the insertion site, I am sent down for labwork, I am taught how to do a new kind of dressing change for the time being, I am sent down to the 5th floor for an 1 1/2 hour infusion of antibiotics, then I talk with a nurse about infusing my own antibiotics twice a day starting this morning. Fun, fun, fun. Wait, wait, wait. I tell Casey, "Maybe I'm just not meant to do this study?" Of course, she's so positive and cheers me up, encourages me to hang in there, gives me a big hug, and we go on a walk (kids are at school) and get some coffee and tea. All better now - how lucky am I!

In the news: Mariners sign Chone Figgens to play 3rd base, a bargain at 'only' 36 million for 4 years. Jack Kearny is in a holiday choir concert tonight at school. And, the healthcare debate in the House and Senate goes on.

Two more days? How about a little history.

Two days until I should be admitting to the hospital. Of course, with how all of this has gone over the last 7ish months, you never know. I definitely don't put all my faith in timelines with this stem-cell study. I told Casey today that the way in which this LONG process has gone shows why only 10 people have had the procedure done at Fred Hutch so far. By that I mean, many people apply and want to do it, but the road to actually starting is quite long and arduous. Not only does living with MS make you stronger, but waiting for study protocols to all line up makes you become a much more patient person as well.

Well, it's Sunday, a day for football I know, but how about a little bit of 'reflection' too? I figured that I would run through the MS story and how I got to this point. I know this may be a repeat for many of you, but I'm thinking about the few people who don't know how I got in this situation, but also for my kids, who may read this in the future. Since we only told Jack (and Owen) about my MS diagnosis in mid-Sept, this may someday help them make sense of how this crazy thing all started.

Anyway, many of you probably don't know a ton about multiple sclerosis. But, it affects a lot of people. Numbers vary, but approx 1 out of every 700-800 people in the U.S. have it - that's a lot. And, each person's journey is variable and takes a path unique to them. One of the only things in common is that it pretty much sucks for all people and their families equally. While some people can have a very mild, slow-progressing type and live with it for 40+ years, some begin with a very aggressive (called primary progressive) form which debiltates them very rapidly. Then, there is a large spectrum in between, some progressing more slowly and some more quickly than others. In addition, the symptoms each person experiences also vary a great deal. I can't even begin to list all the 'possible' symptoms here, but mine include a lot of sensory issues and leg weakness. Of course, when you're having an exacerbation (also called a relapse), symptoms are worse, then they subside to some point in between. The problem is that after a relapse, most of the time you return to a new 'baseline.' This is the progression thing happening, as you are likely to carry some small (or not so small) increase in disibility with you after each relapse (also called a period of remission). Over time, these little 'increases' end up creating significant disabilities in some people.

I was diagnosed by an MRI in Oct 2007. Since then, I have had a few relapses and each time I'm not quite back to where I was before. My symptoms started with numbness, itching and pain (like getting stuck with needles) in my right arm and within a couple of days I had quite a few painful and uncomfortable issues in both my right arm and leg. I had as far back as Dec 2005 (hindsight is 20/20 you know) noticed some numbness or tingling in an arm or leg before, but always just thought, "I tweaked my neck" or "I strained my back," so I didn't ever go in for it. In Oct 2007 when it involved BOTH my arm AND leg, I knew something was not right. But, let me give you an example of how messed up this disease is. In 2007, before getting diagnosed, I climbed the Columbia Tower (the climb for Leukemia/Lymphoma) in the 8th fastest time out of 4,400 people, I rode 15 centuries on my bike, and I hiked over the Olympic Mountains with a friend (Neil, on the Big Stupid Hike, as our wives call it) from Lake Quinault to near Port Angeles in one day (actually 20 hours). I'm not saying this to highlight anything about me, but to show how weird and unpredictable this disease is. I was doing all of this stuff, seemingly leading a normal life, jut a few weeks to a few months prior to my diagnosis, then whammo. It's mind-boggling to me sometimes. As far as treatments, there are a number of options and things have really come a long way in the last 15 years. Of course, there is no cure, but from the medications, you get the hope of slowing down the desease progression. The medication that I was on wasn't really working well for me, but I should mention that these meds are great and they really help a lot of people to live longer and more fulfilling lives with MS.

Between my diagnosis and April 2009, I had discomforts here and there and a few limitations at times, but on the whole, I was able to keep up with the kids, take some great vacations, coach baseball, work just fine, keep up on house projects, and generally do what I wanted. Then in April, I was at a party and was talking with a couple of Casey's friends (Kim and Blayn - love you guys), and they mentioned that they had a friend who had a stem-cell transplant for his MS. We chatted, and I asked a lot of questions, but told Casey on the way home that they must be talking about something else because "I've never heard about a stem-cell transplant for MS, but, I'll look into it." Over the next month of so, I asked my doctor, looked up the HALT-MS study, and got to talk to the guy who had the stem-cell transplant (Sean, you were a big help. Thanks!). I then contacted the research nurse on the study at Fred Hutch, gave them my medical records, had an appt with one of the doctors, then waited...for a long time. Finally I got a call in late July that I had been accepted - of course this was pending my insurance approval and no issues arising in the pre-transplant testing.

The insurance approval came quicker than expected, then on Sept 16th, I began the process of being tested, and I mean tested. I'm a nurse in a Cath Lab and it takes me a month to stick as many needles in people as I had stuck in me. But, no pain, no gain, and I really appreciated that they need to be very thorough. So, thank you Seattle Cancer Care Alliance (SCCA), you guys and gals are great.

I had the IV catheter placed in my chest on Sept 28th. At this point I thought I would just sail to the 'admit day' at the UW. Not so fast. I got shots of a med called GCSF, then went through a process called apherisis to 'donate' the cells that I will be getting back after I go through chemo. Then, on my last day of apheresis, I began to get a runny nose. I told them and they did a sinus culture which was positive for Rhinovirus (aka, the common cold). I never got more than a runny nose, but I continued to test positive for the next 7 weeks. During the last couple of weeks the study was also put on "hold" by the National Institute of Health, so that was up in the air too, even if I did eventually test negative. Finally, last Tues, I tested negative AND they heard from the NIH the day before that the study could begin again. So, here we are.

This brings us to the last few days. Well, I've had a weekend of being sequestered at my mom's house in Ballard, and then will have an appt tomorrow at the SCCA (all of my care has been done at the Cancer Care Alliance, as they are the clinical arm of Fred Hutch). I've been told that I will then admit on Tues morning to start my treatment. I guess I'll hear tomorrow it that's actually the case. Stay tuned.

I'll talk to you all soon. Again, thanks for reading and any comments and/or questions along the way would be appreciated. It lets me know that people are out there and gives me (or Casey) something to do. Now that this thing is hopefully going to get rolling, and no more history will be needed in the blog, so I'll try and make this my last really long entry. Only the sorted daily details from here on out.

In the news this weekend: Huskies crush Cal (sorry Casey) to end the season with 5 wins, Amanda Knox convicted of murder (I don't agree, the Italian justice system is a joke), and the Seahawks fired Tim Ruskell and beat San Francisco to get to 5-7. As you can tell, kind of a slow news weekend.

Well, I hope it's finally a GO...I think.

Hello everyone. I have been holding off on starting some sort of communication journal for this crazy stem-cell transplant journey because there were some moments when I really wasn't sure it was going to actually happen - and I didn't want to jinx it. Anyway, I will probably, over the next few days, recount my last few months of getting to this point.

I began talking to Casey about having some sort of 'blog' so that people could just check in and see how things are going. I didn't want people to be wondering what's going on or call her with a million questions. [[Oops, hang on, what am I saying, Casey loves to hear from people, talk on the phone, etc, so please don't hesitate to call her.]] I really wanted a venue that both Casey and I could write updates just to keep people informed. Then, on one of my many long walks I've taken lately, I realized that I am going to use the 'blog' thing for myself too. I hope it helps others know what's going on (by the way, thanks for caring about Casey, the boys and I...much appreciated!) with us and the transplant, but I am going to be going stir-crazy. I will be very isolated from people for a very long time and I am going to need to feel that I am having some sort of conversation with people, you know, some connection. I have a feeling I'm going to write really long 'blog' notes at times, so I won't feel bad if you don't read them, skim them or only read every 3rd or 4th day. The key is, I want to encourage people to write comments back to me, say hi, ask questions, etc. This will help me know that people are still out there. Writing something (if I can) in the 'blog' everyday, seeing comments people write and answering questions will give me something to do. So, I want to apologize in advance if I write too long of entries some days, but please just amuse me, and remember that I'm not really doing a whole lot else. Of course my mom did buy me a kit for doing jewelery beading, so I will always have that to fall back on.

Well, that leads me to today. I had an appt at the Seattle Cancer Care Alliance this week on Tues (my weekly 'clinic' visit) and I was told that the study is back on (it had been on hold for a just over a week), so they would get me in after I cleared my rhinovirus (aka. the common cold). I first tested positive for this on Oct 13th, so this has taken quite a while. Although you don't have symptoms anymore, the common cold can be cultured from your sinuses for up to 8 to 10 weeks, or longer. It's been a long 6+ weeks! They did blood work, chest xray, checked the site of the IV line in my chest, vital signs, AND another sinus culture. This is now my SIXTH one. They take saline in a syringe, then one nostril at a time, have you tilt your head back and shoot it up your nose, then you blow really hard into a cup. It's really not that bad, it's just that I was getting pretty tired of the same 'ol routine --- 1) appt 2) sinus culture 3) phone call saying it was positive and "we'll be in touch next week."

Didn't hear anything Wed. But, this morning, Anne (my assigned transplant nurse - she's super nice) called just as Jack and I were getting ready to walk to school and she said, "I have good news, you're negative! You need to come in for a blood draw today, then a clinic appt Mon, and then we'll admit you for conditioning (their kinder, gentler name for chemo) on Tues morning. Just don't get sick. Call me if you need anything." All I could think about was how Owen has been wiping his nose all over his sleeve all morning before Casey took him to school. Then, I took Jack to school and told Casey the news, she had been volunteering early in Jack's classroom. On my way home my mom (aka. The Voice of Reason) called and, without going into the sorted details, convinced me it would be in my best interest to spend the next few days at her house, by myself. She offered to leave and I could have the entire house to myself. So, here I am, writing my first 'blog' entry.

By the way, I am going to try and end each 'blog' entry with a few NEWS highlights from the day, so that when I look back after my chemo-head clears, I'll have some landmarks to maybe help me remember things better. So, these are another thing that you can just ignore if you want, but they'll help me possibly make sense of things later.

Huskies 1st loss to Texas Tech, Skyped kids before bed, Oregon going to Rose Bowl after winning Civil War, Awaiting Amanda Knox verdict (come on, admit it, you're waiting too), watching the fallout on Obama sending "30,000 more troops to Afghanistan"
(did I spell that right?), and, finally, will someone please tell me what Tiger was thinking?