I can't believe it's almost the end of January. It's not like the month 'sped by' or anything, but it's still nice to have gotten through the first month without any big issues. I really couldn't have asked for a better 'post-transplant' month. As in most situations, the positives far outweigh any negatives. Plus, it's hard to complain when you have gotten an unbelievable opportunity to try and knock-out, or at least set-back, the MS process the way I have. Nationally, only about 25 people will be enrolled in the HALT-MS study, so I really feel very lucky.
Here are some statistics that relate specifically to Washington State - just FYI. Approximately 1 in every 700 people has MS! Hard to imagine it affects that many people, but it does. Now, think of the two most prevelent cancers affecting Washington State residents and you will find that MS diagnosis' are right in the middle of the two of them. Prostate cancer will be diagnosed in 1 out of every 653 men in our state and breast cancer will affect 1 out of every 763 women (these are all 2005 statistics). I'm showing these numbers to help put the prevelence of MS in context, as many people think it's a "rare" disease. Also, when I seek out information like this it reinforces to me how grateful I am that I was afforded this gift of being able to try the stem-cell transplant. I know I keep saying how "lucky" and "grateful" I am, but I really do feel that way, and I think about it everyday.
As I mentioned earlier, the positives far outweigh the negatives since having the transplant. January has been a month that I stayed healthy (no colds, coughs, virus', infections, etc) and I have a surprising amount of energy and spring in my step. I am getting out everyday to walk, sometimes see a movie, stop by the store, and anyting else that doesn't involve big crowds or sick people. The negative is pretty obvious, being that I haven't been living with Casey, Jack, and Owen since basically mid-October. But, I see them a lot, stop by the house to say hi and get a hug, go on walks with Casey, have had a few sleepovers with the boys, pick them up at school, and talk to them often on the phone. Plus, this situation is hardly something to complain about, as my family's situation pales in comparison to the challenges many many other people face on a daily basis. If there's one thought that's in my head everyday, it's that most situations need to have a healthy dose of PERSPECTIVE applied to them.
In fact, I believe that every situation you find yourself in needs to be dipped in a giant vat of PERSPECTIVE. Then, taken out, let dry briefly (aka. mull it over), and then re-assessed. When I put me and my family's situation in that giant vat of perspective, it's clearly evident how lucky we are and how much we have to be thankful for. Once the light of perspective is shined on a situation, it may not make you instantly accepting and happy about it, but it at least let's you know that there are always many people facing either the same situation or much worse. I'm always amazed at how resilient and adaptive the human species is and how when problems, obstacles, or challenges get in our way, we just do what we can and what is needed at the time.
After getting a few emails giving me a hard time that the 'profile' on the blog was blank, I went ahead and filled it in today. This way you'll have a better idea of what music to buy and know certain important facts, like... Shawshank Redemtion is the best movie ever. Anything I can do to help.
Overall, I am feeling very well. I still go in for weekly blood work and an appointment. No problem with any of my blood counts or other lab work except that my potassium was a bit low, so I'm back on daily supplements. I continue to take most of the other medications. I have had a bit of my MS symptoms in my right arm, mostly itching and tingling. This doesn't really bother me because it's much less than I've had many other times in the past. Funny what you can get used to. They mentioned that most patients in the study have had some MS symtoms within a couple of weeks of going off of the prednisone. I started getting this arm thing about 4 or 5 days after it was tapered off. But, it's really very minor and doesn't stop me from doing anything at all. I'm walking a lot of miles and feel I am able to do it without any problems. My legs get a bit tired, but I think this is from the loss of muscle, not anything else. I really have no fatigue at all, so I'm grateful for that. I really feel like I don't have much to report on the medical front in this blog. It doesn't make for the most exciting reading, but I guess I see that as a good thing.
Here's a 'nuclear' family update. Casey is doing well. She's working on setting up what she'll be doing next year at school. It looks like she'll be able to continue doing a 'job share.' This is great as it will allow her to continue teaching part-time, as her and another teacher 'share' a classroom for the year. Jack is also doing great. Still involved in chess club and choir at school. Indoor soccer just ended and we signed him up for baseball. No more coach pitch, this year he'll see live pitching from other kids, so that will be a new challenge. Owen is also doing very well. He has had a slight cough the last few days and missed school on Wed and Thurs. I thought I would be going home tomorrow (Sun 1/31), but it may be more like mid-week just to give Owen time to get over his cold. He is a cute little guy and his spanish amazes me every time I see him. It'll be interesting to see how long I am able to live at home without getting a bug of some kind. I have three different school converging on our household through Casey, Jack and Owen. But, we'll just do the best we can - keep the house clean and wash hands well. Not much more to do than that.
Well, if your crocus' and tulips are emerging from the ground as our are doing, happy early spring! I'll check in next week. Maybe I'll have more medical things to say, but nothing too exciting I hope. Take care. Mike
Saturday, January 30, 2010
Wednesday, January 20, 2010
Get something to drink, this is a long one. :)
Hello everyone. Hope you are all doing well and having an event-free January. My goal is to try and do an update weekly, so I guess that means I am a day or two late with this post. Casey and I went on a walk today, had a very nice lunch and she asked about me writing something in the blog. Casey did not say one unkind word to me about not writing something since Jan 12th (as she loves me and knows my deficiency in this area of communication), but I kind of started feeling like I was dropping the ball a bit. As some of you may know about me, I am not someone who would ever have a computer or internet 'problem,' as I often go a number of days without getting on to the computer (other than to check email). I know I am an aberration and most people probably don't relate to this, but I am extrememly 'unconnected' technology wise. Well, maybe my 90 year old neighbor across the street is less connected, but pointing that out really doesn't make me look any better. I have a cell phone and do email, but that's about where it ends for me. I have tried to investigate within myself lately why I have this aversion to being 'connected' and involved in the various social networking sites and situations. No good answer came to me. I'm not sure what my deal is, but I can assure you I will continue to explore deep within myself to answer this question. Until then, I am commited to writing a weekly blog update! If nothing else, as I've said before, it would be nice to have a record of this journey to reflect back on when heads are clearer, kids are older and time has passed to a point where the details risk becoming lost within the vast filing system of ones brain.
First, I want to mention that I am so appreciative of the support and interest from all of our family and friends. Everyone who has taken and interest in this adventure has truly uplifted me on every emotional and physical level possible. It feels so good knowing that there are all these people out there who not only care about how your doing, but also take the time to read about the highs and lows of the process. We all have demands on our time and each day's free time is limited, so thank you for caring about my family enough to check-in and see how we're doing. It really means a lot to us knowing you're out there!
Casey and the boys went to Los Angeles for the weekend. They had fun at the zoo, the aquarium, the Santa Monica pier and the La Brea Tar Pits. But, unfortunately, they couldn't escape the rain. Sounds like they had a nice day and a half, then the first of three storms came through on Monday. It sounds like they would have been better off renting a boat, as getting back to the airport yesterday was quite a challenge with all the water on the roads. Luckily, they made it back safely and I think they're happy to be home in sunny Seattle.
As far as a clinical update goes, I'm doing very well. The central line IV catheter in my chest was removed last Thursday. I have been healthy with no fevers. I feel good and actually yesterday was "released" from my team at the SCCA (Seattle Cancer Care Alliance). They said that I am a model patient in how well I've done, but in the same breath reminded me of the many pitfalls that I need to be aware of in the next few months. They break things down into 3, 6, and 12 month time periods. They are very clear that I won't have a fully functioning immune system until at least 12 months, and maybe longer. But, each month, I will be better protected than the previous one. So, it has been made very clear to me that I "must not get complacent" and "fall off the horse" with regards to following the rules and observing the restrictions that are in place to "protect" me. I think I got 'The Talk' because I started mentioning that I wanted to do some landscaping work on our planting strip in the front yard and I wanted to tear out our old fireplace and build a new one with some cool fluted molding and tile. I don't want any setbacks at this point, so I am going to follow the rules. After the patience and love of my wife, kids and mother (and many other people), I would feel aweful if I wasn't doing my part and ended up back in the hospital - away from them again.
I do get a bit tired sometimes, but am able to walk and do any activities I want throughout the day. I notice I'm not needing as many breaks like I did two weeks ago. I walked around Green Lake today with Casey, had lunch and bought her some new running shoes. I'm very excited she got new running shoes, as we figured out that I bought her current ones for her in either 1990 or 1991...yikes. Although walking and doing pretty much anything I want is fine, I have to say that my leg muscles really suck. I thought most of the muscles loss was due to inactivity and prednisone (last day to take it is tomorrow!), but they mentioned at my discharge appt yesterday that the chemo destroys many of those cells too and at some point I was probably burning some muscle for energy. So, sounds like there are a number of reasons for the muscle loss. It's crazy how you can lose the muscle so quickly, but it'll probably take a year or more to build it back.
I will now transition to an oncologist for weekly visits that will eventually become every other week visits. He will be keeping a close eye on my blood counts and screening for virus' (specifically EBV, CMV and JC virus - all of these would require prompt attention and treatment). I will continue on anti fungals, virals and bacterials for most of this year. I need to obviously not be exposed to people who are sick, the flu, and hope not to get some other common kid virus', like RSV. My blood counts are doing well. They always fluctuate a bit each week, so it's something you just have to get used to, as one week they're up and the next they're lower. The biggie that will take the longest for me will be the lymphocytes (these are the T-cells and B-cells). Most people come out of a transplant with some of these types of cells, but I was left with none of these. I was given an extra medication (called anti-Thymoglobulin or ATG) to make sure I was 'T-cell depleted' and then only given back the basic and earliest of stem cells (this is called CD34 selection), so that I would not have any of my old T-cells. This is because in MS, the T-cells are what are attacking the myelin sheath around the nerves, so they don't want you to get your old ones back. But, this means that I will be 3 to 6 months behind a normal patient on grafting my lymphocytes back to a normal level. The oncologist's job is to make sure my counts are progressing nicely and headed in the right direction. So far, so good.
I am very grateful to have done so well and be sent on my way by the Gold Team staff at the SCCA. Once they release you from your 'team,' there is no going back. All care from here will be handled by the oncologist and my family physician. It feels kind of funny to have the SCCA security blanket taken away. I knew when my transplant nurse, Anne, gave me a big hug and my transplant doctor shook my hand before leaving the conference room yesterday, that my days of them watching over me so carefully were over. I'd only be seeing them if I visited to say hi or ran into them at REI or something. I will always be grateful of how wonderful the Gold Team personnel were. They take such good care of you and watch over you so closely as you go through this very risky, yet rewarding, process of having a stem cell transplant.
Boy, I'm going on and on here...sorry. But, two more quick things. I am hoping to get back home to Wallingford by the end other month (yep, like in the next 10 days or so). We're making plans now with the kids, some new routines, and stuff to get things in order. I'm really looking forward to getting kids up in the morning, making them breakfast, getting them to school, and making dinners. Kind of funny how things that once seemed mundane, now look like exciting and fun activities to look forward to each day. I can't wait!
Finally, I want to publicly thank my mom. She is amazing! So strong, so generous and so smart. I was concerned about being a burden staying at her house for so long and really didn't know if it would get annoying for her to have me pushing the pause button on her usually busy life. But, not one moment has she made me feel anything but loved and welcomed. In fact, we talked the other night about how this is actually kind of a gift. How many mothers get to have their 42 year old son come home and hang out for a month. We've had breakfasts and dinners together. Sit and read that paper in the morning. Go to a matinee movie on a Tuesday. We've been able to talk about life, family, goals, politics, and so many other things. It's truly been a blessing to be able to spend this time together. So, thanks mom and I love you very much! Oh, and also, Happy Birthday tomorrow.
Thanks again to everyone. Talk to you all next week. Mike
First, I want to mention that I am so appreciative of the support and interest from all of our family and friends. Everyone who has taken and interest in this adventure has truly uplifted me on every emotional and physical level possible. It feels so good knowing that there are all these people out there who not only care about how your doing, but also take the time to read about the highs and lows of the process. We all have demands on our time and each day's free time is limited, so thank you for caring about my family enough to check-in and see how we're doing. It really means a lot to us knowing you're out there!
Casey and the boys went to Los Angeles for the weekend. They had fun at the zoo, the aquarium, the Santa Monica pier and the La Brea Tar Pits. But, unfortunately, they couldn't escape the rain. Sounds like they had a nice day and a half, then the first of three storms came through on Monday. It sounds like they would have been better off renting a boat, as getting back to the airport yesterday was quite a challenge with all the water on the roads. Luckily, they made it back safely and I think they're happy to be home in sunny Seattle.
As far as a clinical update goes, I'm doing very well. The central line IV catheter in my chest was removed last Thursday. I have been healthy with no fevers. I feel good and actually yesterday was "released" from my team at the SCCA (Seattle Cancer Care Alliance). They said that I am a model patient in how well I've done, but in the same breath reminded me of the many pitfalls that I need to be aware of in the next few months. They break things down into 3, 6, and 12 month time periods. They are very clear that I won't have a fully functioning immune system until at least 12 months, and maybe longer. But, each month, I will be better protected than the previous one. So, it has been made very clear to me that I "must not get complacent" and "fall off the horse" with regards to following the rules and observing the restrictions that are in place to "protect" me. I think I got 'The Talk' because I started mentioning that I wanted to do some landscaping work on our planting strip in the front yard and I wanted to tear out our old fireplace and build a new one with some cool fluted molding and tile. I don't want any setbacks at this point, so I am going to follow the rules. After the patience and love of my wife, kids and mother (and many other people), I would feel aweful if I wasn't doing my part and ended up back in the hospital - away from them again.
I do get a bit tired sometimes, but am able to walk and do any activities I want throughout the day. I notice I'm not needing as many breaks like I did two weeks ago. I walked around Green Lake today with Casey, had lunch and bought her some new running shoes. I'm very excited she got new running shoes, as we figured out that I bought her current ones for her in either 1990 or 1991...yikes. Although walking and doing pretty much anything I want is fine, I have to say that my leg muscles really suck. I thought most of the muscles loss was due to inactivity and prednisone (last day to take it is tomorrow!), but they mentioned at my discharge appt yesterday that the chemo destroys many of those cells too and at some point I was probably burning some muscle for energy. So, sounds like there are a number of reasons for the muscle loss. It's crazy how you can lose the muscle so quickly, but it'll probably take a year or more to build it back.
I will now transition to an oncologist for weekly visits that will eventually become every other week visits. He will be keeping a close eye on my blood counts and screening for virus' (specifically EBV, CMV and JC virus - all of these would require prompt attention and treatment). I will continue on anti fungals, virals and bacterials for most of this year. I need to obviously not be exposed to people who are sick, the flu, and hope not to get some other common kid virus', like RSV. My blood counts are doing well. They always fluctuate a bit each week, so it's something you just have to get used to, as one week they're up and the next they're lower. The biggie that will take the longest for me will be the lymphocytes (these are the T-cells and B-cells). Most people come out of a transplant with some of these types of cells, but I was left with none of these. I was given an extra medication (called anti-Thymoglobulin or ATG) to make sure I was 'T-cell depleted' and then only given back the basic and earliest of stem cells (this is called CD34 selection), so that I would not have any of my old T-cells. This is because in MS, the T-cells are what are attacking the myelin sheath around the nerves, so they don't want you to get your old ones back. But, this means that I will be 3 to 6 months behind a normal patient on grafting my lymphocytes back to a normal level. The oncologist's job is to make sure my counts are progressing nicely and headed in the right direction. So far, so good.
I am very grateful to have done so well and be sent on my way by the Gold Team staff at the SCCA. Once they release you from your 'team,' there is no going back. All care from here will be handled by the oncologist and my family physician. It feels kind of funny to have the SCCA security blanket taken away. I knew when my transplant nurse, Anne, gave me a big hug and my transplant doctor shook my hand before leaving the conference room yesterday, that my days of them watching over me so carefully were over. I'd only be seeing them if I visited to say hi or ran into them at REI or something. I will always be grateful of how wonderful the Gold Team personnel were. They take such good care of you and watch over you so closely as you go through this very risky, yet rewarding, process of having a stem cell transplant.
Boy, I'm going on and on here...sorry. But, two more quick things. I am hoping to get back home to Wallingford by the end other month (yep, like in the next 10 days or so). We're making plans now with the kids, some new routines, and stuff to get things in order. I'm really looking forward to getting kids up in the morning, making them breakfast, getting them to school, and making dinners. Kind of funny how things that once seemed mundane, now look like exciting and fun activities to look forward to each day. I can't wait!
Finally, I want to publicly thank my mom. She is amazing! So strong, so generous and so smart. I was concerned about being a burden staying at her house for so long and really didn't know if it would get annoying for her to have me pushing the pause button on her usually busy life. But, not one moment has she made me feel anything but loved and welcomed. In fact, we talked the other night about how this is actually kind of a gift. How many mothers get to have their 42 year old son come home and hang out for a month. We've had breakfasts and dinners together. Sit and read that paper in the morning. Go to a matinee movie on a Tuesday. We've been able to talk about life, family, goals, politics, and so many other things. It's truly been a blessing to be able to spend this time together. So, thanks mom and I love you very much! Oh, and also, Happy Birthday tomorrow.
Thanks again to everyone. Talk to you all next week. Mike
Tuesday, January 12, 2010
Slacker?
Casey said to me the other day, "What's up with the blog? You're kind of slackin'." Yikes, I guess I am. I really didn't just want to write daily 'stuff' I'm doing, as I'm not too sure people really want to read about my miles walked, what I had for breakfast, or what time I took my shower. Since most people know me as a bit of an anti-tweeter and anti-facebooker (this is just me of course, as I would never judge anyone else on their need to communicate and connect with others - how do you like that disclaimer). I have steadfastly refused to join the 'ultra-connected' generation, as I really don't feel everyone needs to know that I'm sweeping the kitchen and then plan to snack on some yogurt. So, that being said, I'm sorry if I didn't give an update (I have gotten lots of emails checking if I'm "ok?"), but I think I was a bit afraid that I would be entering the shady, slippery-slope gray area of over-commuinicating to people. And, unfortunately, these days, overcommunicating often descends one into the realm of TMI.
Yet, I actually do have a bit of info, so I would like to update everyone on how things are going. Things are going great! I'm still at my mom's house, but have had movie nights with Casey and my brother, sleepover with Jack (Owen will have one on Thurs), dinners with friends of my mom, and getting out of the house all the time. My out of the house time is walking, appts at the clinic, went to Bartell's today (I jump like a scared kitten when someone coughs), stopping by Kidd Valley for a double cheesburger, etc.
Getting out and about - good. Sick people and big crowds - bad. All that being said, I am very grateful for how well things are going and realize that I need to be very diligent (and a little bit lucky) and really try and stay healthy. I don't want to assume something is 'going to get me,' but I also want to be realistic that I could pick up an illness that would set me back a bit. I am cautiously optimistic that I will continue to progress uneventfully.
Transplant wise, I'm Day +25. Today is actually exactly one month from admitting to the hospital, chemo was started on Dec 12th. The staff feel I am unbelievably "ahead of schedule," but I try and keep that in perspective related to who usually is having this procedure done. Most patients who have a stem-cell transplant are battling life-threatening diseases (usually cancer) where they are much sicker than I was going into this. So, I tell the staff at the SCCA to please not give me much credit for getting out of their hair quickly, but realize that I am just luckier than most of the patients whom they usually are providing these life-saving services for. I only hope that I will, in the end, prove that this procedure can be done very safely on patients with early-stage MS and that it is a treatment that will truly HALT this sucky disease. If that comes out of me doing this study, I will be very happy. But, I will think everyday of the many patients I met and saw battling for their lives while I have been receiving treatment at the SCCA, Fred Hutch, and the UW Hospital. I feel like I was extrememly lucky to have a once-in-a-lifetime opportunity (remember, this was a choice I/we made), for which I will always be grateful, but the people battling multiple myeloma, leukemia, lymphoma, and other horrific diseases, are the true heroes.
I got off on a tangent there, sorry. I was mentioning that I am Day +25. I have my Long-Term Discharge Class tomorrow. I will get my Hickman IV line removed on Thursday. I will have my last SCCA clinic appt on Friday. And, next Tues will be my "exit conference." I'm glad to be getting kicked out of the clinic and onto weekly visits with the oncologist. I will see an oncologist until July 5th (longer if needed). He will check my blood work weekly until early March, then every two weeks until early July. My counts go up and down, but are at a good level. It's that darn 'micro-immunity' that is going to take so long to mature. I really have very little, if any, protection from virus', so I'm glad my whole family have had both flu vaccinations.
My goal is to get home sometime later this month. I would have to come back to my mom's for a few nights if anyone gets sick at home. I then plan to lay pretty low (like I'm doing) until the three month mark, but will plan on being the full-on house husband. I'm really looking forward to walking kids to school, cleaning up around the house (no vacuuming yet), cooking dinners, and just hanging with the family again. There are so many things I won't be able to do (especially until six months), so I figure I'll try and do a lot of biking and hitting golf balls.
I have talked with a few people (Diane, John, Sharon, Kathy) about walking. I am going to try and get a walking schedule started next week. If anyone has a day(s) they would like to get out and walk, please send me an email. I would adjust to the 'time' that worked best for you since it doesn't matter to me if it's in the morning, middle of the day on a day off, or in the evening after work. Diane, I'm going to give you a call (I meant to do it Sun...sorry), but any emails from anyone else who would like to walk for an hour or so around Green Lake, the Ballard/Phinney area, or even somewhere else would be fun and something for me to look forward to. Probably in and around Seattle central is best for me. Sorry, not running quite yet, maybe this spring.
Well, I hope to talk with you all sooner than later. By the way, I'm going to go eat a vanilla yogurt and go for a walk, then come home, shower, and watch American Idol. How's that for TMI...see what I mean? Love to you all. Mike
Yet, I actually do have a bit of info, so I would like to update everyone on how things are going. Things are going great! I'm still at my mom's house, but have had movie nights with Casey and my brother, sleepover with Jack (Owen will have one on Thurs), dinners with friends of my mom, and getting out of the house all the time. My out of the house time is walking, appts at the clinic, went to Bartell's today (I jump like a scared kitten when someone coughs), stopping by Kidd Valley for a double cheesburger, etc.
Getting out and about - good. Sick people and big crowds - bad. All that being said, I am very grateful for how well things are going and realize that I need to be very diligent (and a little bit lucky) and really try and stay healthy. I don't want to assume something is 'going to get me,' but I also want to be realistic that I could pick up an illness that would set me back a bit. I am cautiously optimistic that I will continue to progress uneventfully.
Transplant wise, I'm Day +25. Today is actually exactly one month from admitting to the hospital, chemo was started on Dec 12th. The staff feel I am unbelievably "ahead of schedule," but I try and keep that in perspective related to who usually is having this procedure done. Most patients who have a stem-cell transplant are battling life-threatening diseases (usually cancer) where they are much sicker than I was going into this. So, I tell the staff at the SCCA to please not give me much credit for getting out of their hair quickly, but realize that I am just luckier than most of the patients whom they usually are providing these life-saving services for. I only hope that I will, in the end, prove that this procedure can be done very safely on patients with early-stage MS and that it is a treatment that will truly HALT this sucky disease. If that comes out of me doing this study, I will be very happy. But, I will think everyday of the many patients I met and saw battling for their lives while I have been receiving treatment at the SCCA, Fred Hutch, and the UW Hospital. I feel like I was extrememly lucky to have a once-in-a-lifetime opportunity (remember, this was a choice I/we made), for which I will always be grateful, but the people battling multiple myeloma, leukemia, lymphoma, and other horrific diseases, are the true heroes.
I got off on a tangent there, sorry. I was mentioning that I am Day +25. I have my Long-Term Discharge Class tomorrow. I will get my Hickman IV line removed on Thursday. I will have my last SCCA clinic appt on Friday. And, next Tues will be my "exit conference." I'm glad to be getting kicked out of the clinic and onto weekly visits with the oncologist. I will see an oncologist until July 5th (longer if needed). He will check my blood work weekly until early March, then every two weeks until early July. My counts go up and down, but are at a good level. It's that darn 'micro-immunity' that is going to take so long to mature. I really have very little, if any, protection from virus', so I'm glad my whole family have had both flu vaccinations.
My goal is to get home sometime later this month. I would have to come back to my mom's for a few nights if anyone gets sick at home. I then plan to lay pretty low (like I'm doing) until the three month mark, but will plan on being the full-on house husband. I'm really looking forward to walking kids to school, cleaning up around the house (no vacuuming yet), cooking dinners, and just hanging with the family again. There are so many things I won't be able to do (especially until six months), so I figure I'll try and do a lot of biking and hitting golf balls.
I have talked with a few people (Diane, John, Sharon, Kathy) about walking. I am going to try and get a walking schedule started next week. If anyone has a day(s) they would like to get out and walk, please send me an email. I would adjust to the 'time' that worked best for you since it doesn't matter to me if it's in the morning, middle of the day on a day off, or in the evening after work. Diane, I'm going to give you a call (I meant to do it Sun...sorry), but any emails from anyone else who would like to walk for an hour or so around Green Lake, the Ballard/Phinney area, or even somewhere else would be fun and something for me to look forward to. Probably in and around Seattle central is best for me. Sorry, not running quite yet, maybe this spring.
Well, I hope to talk with you all sooner than later. By the way, I'm going to go eat a vanilla yogurt and go for a walk, then come home, shower, and watch American Idol. How's that for TMI...see what I mean? Love to you all. Mike
Thursday, January 7, 2010
Always thankful for a good week.
Hello everyone. I hope you are all doing well and getting through these dark days of January. January has always been my least favorite month because it was always dark when I went to work and dark when I left work to make the drive across 520 back home. And, because I worked in the cath lab, I would often go all day without seeing outside - you know, no windows and all. In addition, it's 31 days long, where I've always thought it should be a 21 day month. Except for the bowl games and my mom's birthday, I've never really enjoyed January. This year though, I really can't complain. I'm feeling good, I'm way ahead of schedule (so they tell me), and I'm on Phase III (I guess I'm considering Phase IV the 3 month to 12 month recovery) of the stem-cell adventure. So, as much as I've whined about January in the past, you won't hear me bemoaning and bad-mouthing this long, dark, depressing, post-holiday month anymore. There, those are my last four disparaging remarks about January in Seattle.
I've had a good first week out of the hospital, so I'll give an update on my 'freedom-week' from room 8260 at the UW Hosp.
I have to say, I'm very thankful for football. I love the bowl games and the NFL playoffs, so that has been very nice to have on TV almost nightly. I'm also getting out a lot each day. I find that my only real issue is that I get tired easily, but if I just chill for an hour or so, I get another wind and am ready to go. I don't nap during the day, just haven't felt the need to, so I sleep well at night. Sometimes with a little help from a sleeping pill, but I blame that on the darn Prednisone. I start tapering the Prednisone tomorrow! I can't stand Prednisone and I feel a lot of my muscle weakness (and sleep stuff) is related to that, so I want it GONE. It'll take two weeks to get off it fully, but it all starts tomorrow.
My 'counts' are good. Platelets are well past 100,000 and going up. Red blood cell count is excellent. Postassium levels are staying up, so I should get to stop the supplements this week. My white blood cell count is over 6,000, which is normal. Of course, the deal with the WBCs are that it will take me 9 months to 1 year to fully develop the important subsets called T-cells and B-cells. These are pretty much non-existent until between 3 and 6 months, then they'll start increasing throughout the rest of the year. This is why I'm not fully protected until a full year. But, the neutrophils (initial responders) are doing great at 5,500 (normal range). So, I am very encouraged by this and hope it just all keeps on growing.
There are two 'bugs' they watch very closely, cytomeglovirus (CMV) and epstein barr virus (EBV). I'll let you google them if you want, but they are bugs that most ordinary people carry, but often don't have problems with because your immune system keeps them in check. But, if you are immunosuppressed, they can do you in. One little issue that came up was I tested positive for EBV before leaving the hospital last week. This is a bad one to get, so they watch it really closely. If you test positive, they consider you 're-activated,' and if you get to a certain level of virus, they begin treatment. I didn't want to deal with this, as the treatment is a drug called Rituxan, and it has a lot of side-effects, so no thanks. Well, the cool thing is that I got tested Tues this week, and I was "non-reactive." So, for now my immune system has rocked the EBV with a body blow, so hopefully it'll stay suppressed.
Another thing is that I would like my central venous catheter line OUT. They don't want to take it out until between 30 and 60 days in case there is a need for IV antibiotics and also for all the blood draws - they feel bad poking people with needles I guess. Needles don't really bother me, so I told them not to keep it in just for my blood draws. Yet, I'm only Day +20, so maybe in a week or two they'll get it out. I want to start hitting some golf balls, but I can't do that with a catheter tunneled from my chest though the jugular vein and into the right atrium of my heart - not super safe I guess. I tried to tell the doctor that if I'm going to have any hope of competing with Bronson and Kirch at the annual Guys Golf Weekend this spring, I gotta get going on hitting some balls at the range. In addition, the line is just a real pain because you have to wrap it each day for showering, wipe it down afterward, take Coumadin (blood thinner) to keep clots out of the catheter, and flush it everyday with saline and heparin. It was cool when I got it because, as Jack would say, I kinda looked like a cyborg, but the cybor-ness has worn off. I feel more hindered than cool these days. Oh well, hopefully soon.
I have had a good week though. Tuesday I went to Sherlock Holmes and ate popcorn with my mom. It was at a real theatre even. We did the matinee and sat way far away from any of the other 14 people who were there. Yesterday, I went on a walk at Green Lake with Casey, had pizza, picked up Owen at school, needed to rest for about an hour, then picked Jack up at school, and then they took me home. Pretty great day. Tomorrow is movie night with Casey. She's going to come over and we're going to watch The Hangover. Saturday night is a sleepover with my brother Paul. Sunday night is a sleepover with Jack. And, then, Owen and I are planning a sleepover for next week too. My brother Ryan brought me an exercise bike. Very nice of him to do that, so we'll see when I can get my legs going on that. I really feel like I've lost so much muscle that I'm going to have a long spring getting back to baseline on the bike. I blame it on the Prednisone, but I suppose chemo had something to do with it too.
I'm kind of excited for the kids and Casey because they are going to Los Angeles for the MLK Jr. holiday weekend (actually Sat through Wed). They've been so great and it'll be a nice break for them. They will visit relatives (Cousin Keri and family) and maybe see Casey's college roomate. Maybe even get a day at Legoland. I'm looking forward to them getting to do something fun, as they've earned it! Plus, it never hurts to feel a little warm sunshine on your face this time of year.
Thanks again to all of you who have helped Casey with the boys and given her breaks occassionally. She's really felt supported by so many people and thankful for all the offers of playdates and kid-sitting so she can get errands done, do shopping, finish some of her schoolwork, or even just put her feet up at Tully's. I'll keep saying it because I don't think we can say it enough, THANK YOU!! I don't want to say that I hope we can return the favor someday, but believe me, if needed, we'll be there for you.
Enjoy the BCS Championship game tonight. I'm thinking Alabama's got this one in the bag. Talk to you all soon. Mike
I've had a good first week out of the hospital, so I'll give an update on my 'freedom-week' from room 8260 at the UW Hosp.
I have to say, I'm very thankful for football. I love the bowl games and the NFL playoffs, so that has been very nice to have on TV almost nightly. I'm also getting out a lot each day. I find that my only real issue is that I get tired easily, but if I just chill for an hour or so, I get another wind and am ready to go. I don't nap during the day, just haven't felt the need to, so I sleep well at night. Sometimes with a little help from a sleeping pill, but I blame that on the darn Prednisone. I start tapering the Prednisone tomorrow! I can't stand Prednisone and I feel a lot of my muscle weakness (and sleep stuff) is related to that, so I want it GONE. It'll take two weeks to get off it fully, but it all starts tomorrow.
My 'counts' are good. Platelets are well past 100,000 and going up. Red blood cell count is excellent. Postassium levels are staying up, so I should get to stop the supplements this week. My white blood cell count is over 6,000, which is normal. Of course, the deal with the WBCs are that it will take me 9 months to 1 year to fully develop the important subsets called T-cells and B-cells. These are pretty much non-existent until between 3 and 6 months, then they'll start increasing throughout the rest of the year. This is why I'm not fully protected until a full year. But, the neutrophils (initial responders) are doing great at 5,500 (normal range). So, I am very encouraged by this and hope it just all keeps on growing.
There are two 'bugs' they watch very closely, cytomeglovirus (CMV) and epstein barr virus (EBV). I'll let you google them if you want, but they are bugs that most ordinary people carry, but often don't have problems with because your immune system keeps them in check. But, if you are immunosuppressed, they can do you in. One little issue that came up was I tested positive for EBV before leaving the hospital last week. This is a bad one to get, so they watch it really closely. If you test positive, they consider you 're-activated,' and if you get to a certain level of virus, they begin treatment. I didn't want to deal with this, as the treatment is a drug called Rituxan, and it has a lot of side-effects, so no thanks. Well, the cool thing is that I got tested Tues this week, and I was "non-reactive." So, for now my immune system has rocked the EBV with a body blow, so hopefully it'll stay suppressed.
Another thing is that I would like my central venous catheter line OUT. They don't want to take it out until between 30 and 60 days in case there is a need for IV antibiotics and also for all the blood draws - they feel bad poking people with needles I guess. Needles don't really bother me, so I told them not to keep it in just for my blood draws. Yet, I'm only Day +20, so maybe in a week or two they'll get it out. I want to start hitting some golf balls, but I can't do that with a catheter tunneled from my chest though the jugular vein and into the right atrium of my heart - not super safe I guess. I tried to tell the doctor that if I'm going to have any hope of competing with Bronson and Kirch at the annual Guys Golf Weekend this spring, I gotta get going on hitting some balls at the range. In addition, the line is just a real pain because you have to wrap it each day for showering, wipe it down afterward, take Coumadin (blood thinner) to keep clots out of the catheter, and flush it everyday with saline and heparin. It was cool when I got it because, as Jack would say, I kinda looked like a cyborg, but the cybor-ness has worn off. I feel more hindered than cool these days. Oh well, hopefully soon.
I have had a good week though. Tuesday I went to Sherlock Holmes and ate popcorn with my mom. It was at a real theatre even. We did the matinee and sat way far away from any of the other 14 people who were there. Yesterday, I went on a walk at Green Lake with Casey, had pizza, picked up Owen at school, needed to rest for about an hour, then picked Jack up at school, and then they took me home. Pretty great day. Tomorrow is movie night with Casey. She's going to come over and we're going to watch The Hangover. Saturday night is a sleepover with my brother Paul. Sunday night is a sleepover with Jack. And, then, Owen and I are planning a sleepover for next week too. My brother Ryan brought me an exercise bike. Very nice of him to do that, so we'll see when I can get my legs going on that. I really feel like I've lost so much muscle that I'm going to have a long spring getting back to baseline on the bike. I blame it on the Prednisone, but I suppose chemo had something to do with it too.
I'm kind of excited for the kids and Casey because they are going to Los Angeles for the MLK Jr. holiday weekend (actually Sat through Wed). They've been so great and it'll be a nice break for them. They will visit relatives (Cousin Keri and family) and maybe see Casey's college roomate. Maybe even get a day at Legoland. I'm looking forward to them getting to do something fun, as they've earned it! Plus, it never hurts to feel a little warm sunshine on your face this time of year.
Thanks again to all of you who have helped Casey with the boys and given her breaks occassionally. She's really felt supported by so many people and thankful for all the offers of playdates and kid-sitting so she can get errands done, do shopping, finish some of her schoolwork, or even just put her feet up at Tully's. I'll keep saying it because I don't think we can say it enough, THANK YOU!! I don't want to say that I hope we can return the favor someday, but believe me, if needed, we'll be there for you.
Enjoy the BCS Championship game tonight. I'm thinking Alabama's got this one in the bag. Talk to you all soon. Mike
Monday, January 4, 2010
One sign you're feeling better - eating ice cream again.
Wow, how the days fly by when you're not sitting on your butt in a hospital room. Of course, I'm just sitting around at home, so I'm not sure why the days seem to go by faster? But they do. Casey mentioned today that she's getting emails checking if things are ok since I haven't written in the blog since New Year's Day. I told Casey that I'm just kind of hangin' out and I didn't really know what to write, nor thought that people wanted to hear about me only, you know, sitting around, without the cool drugs, being in the hospital, feeling crappy, chemo side effects, etc. Now I'm feeling kind of selfish here. Sorry about that.
So, first of all, I should mention that I am feeling pretty good. I get a little tired now and then, but it's really minimal and I have to say I would have expected much more fatigue. Really, if I don't look in the mirror I don't feel too much different than I did before the transplant. Of course, when I look in the mirror, I see that I don't have any hair. At that point, there's no denying what I've been up to the last few weeks. I still go into the SCCA clinic almost everyday for blood work and an occassional appt. This is good because it gives me something to do. Sunday I went to see Jack's soccer game. I just hung out with Owen on the other side of the field. I actually sat over there watching all the people who were coughing, blowing their noses and wiping their noses on their sleeves - I guess I'm a little paranoid about getting sick still. But, although avoiding crowds will be important for awhile, it's very cool to get out like that. I think my mom and I are going to the matinee of Sherlock Holmes tomorrow (POPCORN!), figuring there shouldn't be a problem being 6+ feet from other people. I've been on a couple of walks and feel pretty good. So, in general, I think I'm doing well. I was waiting for all of the "bad" things that they said I may feel to happen, but I'm past worrying about all that now, and I figure my goal is to just stay healthy and be glad that I skirted many of those unpleasant side effects and discomforts.
I am getting the urge to get exercising. So, I'm going to check at my clinic appt today whether or not that's ok. I don't want to set myself back if it would be too much for my budding immune system to stress muscles, lungs, etc. I just want to start slow with a light ride on an exercise bike and maybe some light stretching, band work, and a few sit-ups. I guess I'll see this afternoon if I get a look like, "don't even think about it."
I'm very happy I'm eating and drinking well. Up and around and able to do things for myself. Not having any nausea or pain. Occassionally I get full when I eat too much, but who doesn't. I have had ice cream the last two nights and plan to have some tonight during the Fiesta Bowl. I'm just really trying to follow the rules and NOT get sick. That's really the biggie that could set me back at this point.
It's hard to not be home, but this is the best place for me at this time. Owen has had a light little cough, Casey's had a few days where she felt a bit congested (but not really sick, so it's hard to tell), and Jack felt a little puny yesterday, then missed school today. So, I will visit as often as I can and go to as many functions as I can, but I'm probably here for a few more weeks at least. I have seen them more in the last 4 days than I did in the month and a half prior, so I'm not complaining. I'm also asking today at my appt if I can go home during the day and do some things around the house to help Casey out - cleaning, laundry, getting some stuff ready for dinner, etc. If my 'team' at SCCA doesn't have a problem with that, I'll at least feel like I'm helping out a bit. Casey's done so much in the last couple of months.
Well, thanks again for all the support everyone. You all make my days much brighter and easier knowing how many people are out there pulling for myself, Casey and the boys. I'll get my walking schedule going soon and I'll be in touch with the 'walkers' out there. Talk to you all soon. Mike
So, first of all, I should mention that I am feeling pretty good. I get a little tired now and then, but it's really minimal and I have to say I would have expected much more fatigue. Really, if I don't look in the mirror I don't feel too much different than I did before the transplant. Of course, when I look in the mirror, I see that I don't have any hair. At that point, there's no denying what I've been up to the last few weeks. I still go into the SCCA clinic almost everyday for blood work and an occassional appt. This is good because it gives me something to do. Sunday I went to see Jack's soccer game. I just hung out with Owen on the other side of the field. I actually sat over there watching all the people who were coughing, blowing their noses and wiping their noses on their sleeves - I guess I'm a little paranoid about getting sick still. But, although avoiding crowds will be important for awhile, it's very cool to get out like that. I think my mom and I are going to the matinee of Sherlock Holmes tomorrow (POPCORN!), figuring there shouldn't be a problem being 6+ feet from other people. I've been on a couple of walks and feel pretty good. So, in general, I think I'm doing well. I was waiting for all of the "bad" things that they said I may feel to happen, but I'm past worrying about all that now, and I figure my goal is to just stay healthy and be glad that I skirted many of those unpleasant side effects and discomforts.
I am getting the urge to get exercising. So, I'm going to check at my clinic appt today whether or not that's ok. I don't want to set myself back if it would be too much for my budding immune system to stress muscles, lungs, etc. I just want to start slow with a light ride on an exercise bike and maybe some light stretching, band work, and a few sit-ups. I guess I'll see this afternoon if I get a look like, "don't even think about it."
I'm very happy I'm eating and drinking well. Up and around and able to do things for myself. Not having any nausea or pain. Occassionally I get full when I eat too much, but who doesn't. I have had ice cream the last two nights and plan to have some tonight during the Fiesta Bowl. I'm just really trying to follow the rules and NOT get sick. That's really the biggie that could set me back at this point.
It's hard to not be home, but this is the best place for me at this time. Owen has had a light little cough, Casey's had a few days where she felt a bit congested (but not really sick, so it's hard to tell), and Jack felt a little puny yesterday, then missed school today. So, I will visit as often as I can and go to as many functions as I can, but I'm probably here for a few more weeks at least. I have seen them more in the last 4 days than I did in the month and a half prior, so I'm not complaining. I'm also asking today at my appt if I can go home during the day and do some things around the house to help Casey out - cleaning, laundry, getting some stuff ready for dinner, etc. If my 'team' at SCCA doesn't have a problem with that, I'll at least feel like I'm helping out a bit. Casey's done so much in the last couple of months.
Well, thanks again for all the support everyone. You all make my days much brighter and easier knowing how many people are out there pulling for myself, Casey and the boys. I'll get my walking schedule going soon and I'll be in touch with the 'walkers' out there. Talk to you all soon. Mike
Friday, January 1, 2010
Back home watching football on the couch!
Well, I thought I should take a break from watching my umteenth hour of football and say Happy New Year to people. I hope everyone had a safe and fantastic night as 2010 came rolling in. I wish everyone the best year ever. Casey and the boys spent the night at Steve and Kate's house with another friend, April, and her kids. I'm sure they had a blast, how could 5 boys with noise makers and poppers not have fun - even if it was only 9 pm (heck, it was midnight on the east coast). I was out by 9:30 myself. I slept from 9:30 pm to 8 am. I hadn't slept more than 4 hours without being awakened in the past 3 weeks. I think my body thinks I was playing a trick on it. I'm going to do the same tonight, so my brain will know I wasn't kidding.
I checked out of the hospital yesterday at around 4:30 pm, so I'm finally home at my mom's house. It feels great to be 'out,' and back where I can breath the outdoor air. Nineteen days without taking a breath of fresh air - the things you take for granted. My mom picked me up and on the way home we made a quick stop at the Bronsons just to give the kids and Casey a hug and say hi to Kate, who has been so amazingly helpful! I don't think we can ever thank them enough. You should have seen the look on Jack Bronson's face (he's Jack K's age) when I walked in the door. He briefly looked like he'd seen a ghost, very cute. He's not used to seeing Uncle Mike with no hair.
We then headed to mom's. I think I realized last night and today that, no matter how quickly I hoped I would bounce back, my recovery is going to be long, it's not going to happen in a week. Last night I got some more stomach pains, felt very fatigued, and had some weakness in my legs. The leg thing really weighs me down. It's kind of like when my MS symptoms flare up, you get weakness, some tingling, and a few spasms in lower legs. They felt I would have some of these "MS" problems when my cells were coming in, as it sounds like most everyone in the study did. Since I hadn't had any yet, I hoped I'd skirted them, but maybe not. What's nice is that they usually last a week or two when I get them, but they have improved throughout the day today - so that's good. I'm having no nausea per se, but the stomach 'aching' is a bit uncomfortable. It really waxes and wanes and the worst part is it makes it hard to eat well, which is a big priority for me now. But, I felt better in the middle of the day today, so I'm just going with the flow, knowing there are going to be plenty of ups and downs.
The big wake up calls that are prodding me towards finding my patience again are the many things I still have to attend to daily as I work towards recovery. Daily appts for blood work at the Cancer Care Alliance, clinical appts to follow a few times per week, a big handful of medications everyday (so many, I really don't need breakfast), still hooking up at home to IV fluids (hydration) for 4 hours a day, and needing to rest or I get pretty worn out.
But, there is a bright side, and it far outweighs the discomforts. I am doing very well compared to most people who have this procedure, I am home, I have great support and help, I am looking forward to getting out and walking in a week or so (Sharon, Casey, Diane, John, anyone else), I am past what I feel is the toughest part (chemo, post-chemo, cell engraftment), I am unbelievable lucky and grateful that I was given this opportunity to kick some MS butt (we'll see down the road I guess), and very hopeful that I have given the ultimate gift to myself and my family. Well, you better ask them if the 'gift of Mike' is a good one, but I'm betting they'd say "Yes!" So, I'm going to do my part, work hard to get stronger, and accept and settle-in for the things I have no control over.
I am really looking forward to sitting on the couch with Casey, touching our toes together under a blanket, eating some popcorn, and watching a movie - it's been so long. She still hasn't seen The Hangover, so hopefully that'll be the one we watch because it would be good to laugh out loud for two hours and forget about the last couple of months. I think we deserve it.
Happy 2010! Big hug to everyone, Mike
I checked out of the hospital yesterday at around 4:30 pm, so I'm finally home at my mom's house. It feels great to be 'out,' and back where I can breath the outdoor air. Nineteen days without taking a breath of fresh air - the things you take for granted. My mom picked me up and on the way home we made a quick stop at the Bronsons just to give the kids and Casey a hug and say hi to Kate, who has been so amazingly helpful! I don't think we can ever thank them enough. You should have seen the look on Jack Bronson's face (he's Jack K's age) when I walked in the door. He briefly looked like he'd seen a ghost, very cute. He's not used to seeing Uncle Mike with no hair.
We then headed to mom's. I think I realized last night and today that, no matter how quickly I hoped I would bounce back, my recovery is going to be long, it's not going to happen in a week. Last night I got some more stomach pains, felt very fatigued, and had some weakness in my legs. The leg thing really weighs me down. It's kind of like when my MS symptoms flare up, you get weakness, some tingling, and a few spasms in lower legs. They felt I would have some of these "MS" problems when my cells were coming in, as it sounds like most everyone in the study did. Since I hadn't had any yet, I hoped I'd skirted them, but maybe not. What's nice is that they usually last a week or two when I get them, but they have improved throughout the day today - so that's good. I'm having no nausea per se, but the stomach 'aching' is a bit uncomfortable. It really waxes and wanes and the worst part is it makes it hard to eat well, which is a big priority for me now. But, I felt better in the middle of the day today, so I'm just going with the flow, knowing there are going to be plenty of ups and downs.
The big wake up calls that are prodding me towards finding my patience again are the many things I still have to attend to daily as I work towards recovery. Daily appts for blood work at the Cancer Care Alliance, clinical appts to follow a few times per week, a big handful of medications everyday (so many, I really don't need breakfast), still hooking up at home to IV fluids (hydration) for 4 hours a day, and needing to rest or I get pretty worn out.
But, there is a bright side, and it far outweighs the discomforts. I am doing very well compared to most people who have this procedure, I am home, I have great support and help, I am looking forward to getting out and walking in a week or so (Sharon, Casey, Diane, John, anyone else), I am past what I feel is the toughest part (chemo, post-chemo, cell engraftment), I am unbelievable lucky and grateful that I was given this opportunity to kick some MS butt (we'll see down the road I guess), and very hopeful that I have given the ultimate gift to myself and my family. Well, you better ask them if the 'gift of Mike' is a good one, but I'm betting they'd say "Yes!" So, I'm going to do my part, work hard to get stronger, and accept and settle-in for the things I have no control over.
I am really looking forward to sitting on the couch with Casey, touching our toes together under a blanket, eating some popcorn, and watching a movie - it's been so long. She still hasn't seen The Hangover, so hopefully that'll be the one we watch because it would be good to laugh out loud for two hours and forget about the last couple of months. I think we deserve it.
Happy 2010! Big hug to everyone, Mike
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