Man, I almost forgot how to get onto my blog and post something. I had to try about three different steps before getting in to write an entry. Let that be a lesson to myself.
Anyway, I'll get right into the update so I don't write your eyes off (you know, like 'talk your ear off'). The family update includes a great summer! Awesome to have ALL four of us home - since Casey's out of school for the summer. A few car driving trips and some hikes, but no planes yet for me. And, still tried to avoid crowded places. We love Intiman Theater and the 5th Ave Theater, so when we go to Intiman we try and get a seat in the back row and at the 5th Ave, we're in the front row, so hopefully we're good there. I can't remove all the culture from my life, so I'll just be anti-social at those events and not talk to anyone. I wait all year to go to these plays and musicals and I will not be denied! On the whole though, still trying to be careful with my 'exposures' and will increase that vigilance when flu season starts this fall. I actually haven't even asked yet if I'm able to get a flu shot? I saw they were out already, so I better ask.
Owen has started kindergarten, so now both kids are in school all day. Owen loves it! They are both so cute doing their homework at night. Owen enjoys doing what big bro has done for the last few years. I'm supposed to pretty much stay out of the halls and classrooms this fall, but am trying to stay in touch by being the email Room Rep for Jack's class. Both are playing soccer and are looking forward to some other after school activities (Jack will be taking a Forensics class, how cool is that). Casey is working full-time teaching 3rd grade until just after Thanksgiving. Her teaching partner has a cute-as-a-button little girl she will be home with until then. After the holiday, they'll be sharing the class. The kids are very lucky - how many kids get to have TWO great teachers!
OK, now for the 'clinical part.' Having appts with the oncologist every three months now, so don't have one until sometime in Oct. Blood counts are, not surprisingly, still down. This may be the way it is for 1 to 2 years. And, in reality, who knows if I will ever be back to super-high counts considering my B-cells were a bit low before I even went in for the transplant procedure. So far, platelets and red cells are good, it's just the white blood cells that lag - unfortunately, those are the 'troops.' Maybe I should just consider myself like Iraq; not quite fully protected at this time due to troop withdrawl (as in WBC count depletion). I did have a pretty good cough/cold/fever in late July. I had a couple of those earlier this year, but this time I needed some antibiotics to kick it. It was kind of weird because usually when I get sick, especially fevers, I feel my MS symptoms worsening for a few weeks. But, this time, they didn't get worse? I'm not complaining or anything, but for the past couple of years, I just dreaded getting a cold, since it usually meant more 'issues' and discomfort. Maybe a good sign??
In general, my MS symptoms haven't changed. I guess I consider that good. They are about the same and as long as I don't notice them getting worse, I'm good with that. Still just have varying degrees of achey legs and some off/on spasticity. The tingling/pin prick feelings in my arms still comes and goes, along with the numb areas. And then, the fatigue is usually mild and unpredictable. I still don't get how I can have a numb patch or some tingling at a spot on my arm, and then in an hour, it's either gone or somewhere else. It's also weird, because I can ride a bike and feel great, but then do nothing and feel pretty floppy. Hmmm...maybe this means that I just need to keep my butt moving.
As far as the upcoming plan goes, I will have the Oct visit to check-in, have labs, etc. Then, I will have an end of the year (1 Year Appointment) visit to the Seattle Cancer Care Alliance. At this, I know there is a ton of labs, MRI, and general 'how you doin' evaluation and then setting me up for my immunizations. I'm still a bit unclear on the re-immunization thing. I have heard that you won't receive protection (aka: Sero-conversion) if you get immunizations with your CD4 (a type of WBC) count below 200. My last count (in June) was, I think, 78. Well, not sure what it means if I'm still well under 200. On the other hand, I've heard that you just get the immunizations starting around 12 months and that's it. So, still have to sort this one out, but I suppose they'll tell me. I'm kind of in the mode of, "Tell me what I need to do next when it's time to do it."
My one year anniversary of receiving my stem cells back will be Sat, Dec 18th. This is usually a big date for people who have had a SST. Casey and I wanted to have a get-together at the Wedgewood Alehouse (they have a cool back room), but I'm going to have to check with the powers that be (aka: Doctors) on this. I did do part of the Bike MS Ride last weekend and I don't think they thought I would do that, so maybe this will be ok'd when I plead my case. I'll keep you posted. I know it's in the middle of the holiday season, but stay tuned and if it has to be postponed, just think, you'll have a great party to look forward to in January. And, you all know what I think of the dark and dreary month of Jan. Let's just say, I would love to have something to look forward to.
My best to all of you. Casey, Jack, and Owen send a big hug and many kisses to everyone who has done so much for us this past year. This crazy ride continues and I'll keep you all posted. But, everything is really going well for me (and us) and I don't expect that to change. Talk to you all later. I'll check in with a short post to update you on my blood count numbers in October - since I know you're dying to find out too :)
Thanks, Mike
Wednesday, September 15, 2010
Thursday, July 1, 2010
Stem Cell Transplant ---- the 6-month 'milestone'
Hello to Everyone;
First of all, I hope everyone is doing well out there. I have seen and talked to so many of you that I haven't written anything for a few months - I know, excuses, excuses. But, I figured, at least for posterity's sake, I should get something down on the blog to commemorate the 6-month mark since my stem-cell transplant in December 2009. When I penciled out the "magical" 6-month date out in my head, I thought, "Cool, it'll be summer." Unfortunately, when I was thinking about this in December, I forgot to factor in that I live in Seattle, and summer doesn't actually start until after the 4th of July. How true that is this year! My 6-month mark was on June 18th. This is calculated from the fact that my 'CD34 selected stem-cells' were given back to me on Dec 18th, 2009. I don't know if it's really the "magical" thing that I mentioned earlier, but it feels like a pretty big 'milestone.' You know, like, cool, I probably have survived most of the early issues that can arise (rarely) after an autologous, T-cell depleted, CD34-selected stem-cell transplant.
Anyway, how about if I just give a clinical update and maybe mention our plans for the year and some of the restrictions that are still in place through the rest of the year. When I think about the restrictions and what a pain in the butt they are, I remind myself that I'm already into July!
With the HALT-MS Study there are a number of clinical tests/evaluations that take place at 6-months, 1 year, 2 years, etc. (up to 5 years). I did all of these on June 15th, then had a visit with my neurologist (Dr. Bowen - awesome guy!) on Thursday the 17th. They have you do a walking test, a neuro exam, questionnaires, a 'peg' test to see how the old hands are working, a math test to test how the old brain is working, tons of blood is drawn (somewhere around 26 tubes), and a brain MRI. This all went fine. After having MS for a few years and doing the transplant, I can't imagine still having issues doing medical 'things.' If at this point, one found these types of things daunting or overwhelming at all, you're in for a long-haul.
The 6-month MRI was the thing that was most important to me and according to Dr. Bowen, it "looks unchanged and unremarkable." I know it's only 6 months, but I really didn't want to hear that there were any new lesions on the MRI - no thanks. So, I was very happy with that news and that was probably the most important thing to me. I'll continue to get brain MRIs at years 1 through 5 to check what I hope will be the 'lack of progress' - at least in the MS department.
I haven't seen exact blood counts lately, but I've had blood drawn every couple of weeks and I figure they'd call if there was anything that was overly concerning to them. I do know that my counts are low (white blood cell count is usually hovering around 3,000 - sometimes more and sometimes less) and that is expected. Because of the T-cell depletion I went through (aka: they kill ALL T-cells in your body and then you don't get ANY back in the graft), the full complement of white blood cells is going to take one to two years. My platelets are normal. My red blood cells are normal. The biggie I'm hoping for is that at 1 year my CD4 (a type of white blood cell) count is > 200. I need to have it over 200 to get my immunizations and booster shots. If you aren't at least 200, then you're unlikely to sero-convert and be protected from the diseases you're getting the shots for (i.e. measles, mumps, rubella, pertussis, diphtheria, tetanus, hepatitis, chicken pox, etc). In addition, it's very rare for a graft to 'not take.' If that were to happen, yikes, then I'd have bigger problems I guess - something I'll wait and worry about later if necessary.
I have been feeling pretty good. I have to remember a couple of things. First, this is the 'HALT' MS study, not the 'cure your MS and zap all your old lesions and repair any past damage' study. So, I still have the 9 brain lesions and 2 spinal cord lesions that I've had. At least as far as they know, they ain't going anywhere. Secondly, I will continue to have any symptoms/deficits that I had prior to the transplant. For example, the numbness/tingling in my arm and the leg weakness that comes and goes, may improve over the next 2 years (or so), but that damage is done. In addition, the lesions are also subject to issues when I get sick (like a sinus infection or cold virus). Even before the study, when I got a cold from one of the kids, I felt like crap. This is called a pseudo-exacerbation. They suck, because you really do feel like crap for about 5-6 weeks for every illness that you had (even if the bug only lasted for a week or so). You kind of get a less, but still very annoying, set of MS symptoms. This problem made Feb, Mar, and April a bit uncomfortable since I got a cold once in each of those three months. Although each virus only lasted about 5-7 days (like it would have been for anybody else), I pretty much felt crappy until late May. Now, since then, I've been healthy and have been feeling good - just back to my usual annoying aches, pains, and 'tingles.' I'm more than happy to live with these 'friends' the rest of my life if I truly am able to 'HALT' the MS and keep it from progressing.
I have to say, I'm so glad I did this study. As Casey and I talk about, the upside of 'halting' the MS is huge and if this type of treatment isn't the answer, well, that's life. And, really, how far set back am I? I'd just be in the same predicament I would have been in if I didn't do the study in the first place. The only difference is I would have had a bit of discomfort to go through to find this out. This is a gamble I would take any day, and do again in a second! Plus, I'm getting to spend some great, fun, and quality time with my kids.
So, as far as the rest of my year goes, I still have some pretty annoying, but very important, restrictions. The biggies are:
NO swimming (well, I can get in the water, but I can't submerge my head in a pool or lake r/t sinus').
NO digging in the soil (I water the plants in the yard, but NO gardening, planting, etc r/t aspergillus, a category of molds that are bad for lungs).
WATCH the sun exposure (I need to be careful and use sunscreen!).
NO home improvement projects (this one hurts!).
And, I still will be watching big crowds and sick people to make sure I'm not putting myself in a vulnerable position. That being said, Casey and I have enjoyed uncrowded pubs, restaurants, the theater (Intiman, 5th Ave, etc), movie theaters, and plenty of outdoor exercise and play at the park. It's nice that it's summer, so that the overall viral load is down with the kids, friends, and all the people I encounter out in public.
One sad thing for me is that my brother, Paul, is getting married this summer in Las Vegas. Unfortunately, I'm not going to be able to go. And, this really stinks, because not only is my brother's wedding important to me, but I love Vegas (and so does Casey). I just couldn't swing the crowds and risk I would find on the plane ride, the casino, and the clubs. In addition, I can't swim in the pool and sitting in the sun is a no-no. I need to be smart about what positions I put myself in and after talking with my doctors, this is one that I should probably avoid, as this whole process is all about long-term gain. I'm really going to miss being a part of Paul's big day, but I know he understands that August in Vegas 8 months after a stem-cell transplant is probably not a good idea for me.
We are going to do a couple of car trips to Winthrop, Wenatchee, and Whistler. Huh, I guess I didn't notice that before, but "W" looks like the theme for the summer. Casey is off for the summer with me and the kids. Jack and Owen are doing a number of camps, playing with friends, and are looking forward to the vacations, especially Whistler (they LOVE it up there in the summer). Also, we'll be playing a lot of baseball and trying to get on our bikes a bit more.
That brings me to the MS Bike Ride in September. I have to tell you that if you'd asked me in Feb if I would be doing that ride this year, I don't even think I could have answered, but just given the look of, huh...are you kidding. BUT, I actually have ridden 3 times in the last 10 days or so and after a 6-plus month layoff and 'recovery' period, I am going to try and get going and do at least 60 miles. The 100 miles might be a bit ambitious, but you never know. So, if I come at you with an email for a few $$$ to help out a great cause, I would love your help and generous support. No amount would be too small. Anyway, we'll see if I have it in me when I get a month or so out from ride day. And, I assure you that the National MS Society would appreciate your help too. I know there are so many great causes out there, but at this point, I'm fighting for one that's pretty personal to me and my family. I'll keep you posted.
I guess that's about it for now. AGAIN, thank you so much to EVERYONE who has supported me this year and sent good vibes, wishes, and prayers my way. It all obviously helped a lot! I'm doing great and looking forward to a summer full of fun, eventually some sun, and a continued smooth recovery. Love to you all. Talk to you in a couple of months unless something medically exciting (or challenging) comes up. If it does, I'll get on here and write an update.
Mike
First of all, I hope everyone is doing well out there. I have seen and talked to so many of you that I haven't written anything for a few months - I know, excuses, excuses. But, I figured, at least for posterity's sake, I should get something down on the blog to commemorate the 6-month mark since my stem-cell transplant in December 2009. When I penciled out the "magical" 6-month date out in my head, I thought, "Cool, it'll be summer." Unfortunately, when I was thinking about this in December, I forgot to factor in that I live in Seattle, and summer doesn't actually start until after the 4th of July. How true that is this year! My 6-month mark was on June 18th. This is calculated from the fact that my 'CD34 selected stem-cells' were given back to me on Dec 18th, 2009. I don't know if it's really the "magical" thing that I mentioned earlier, but it feels like a pretty big 'milestone.' You know, like, cool, I probably have survived most of the early issues that can arise (rarely) after an autologous, T-cell depleted, CD34-selected stem-cell transplant.
Anyway, how about if I just give a clinical update and maybe mention our plans for the year and some of the restrictions that are still in place through the rest of the year. When I think about the restrictions and what a pain in the butt they are, I remind myself that I'm already into July!
With the HALT-MS Study there are a number of clinical tests/evaluations that take place at 6-months, 1 year, 2 years, etc. (up to 5 years). I did all of these on June 15th, then had a visit with my neurologist (Dr. Bowen - awesome guy!) on Thursday the 17th. They have you do a walking test, a neuro exam, questionnaires, a 'peg' test to see how the old hands are working, a math test to test how the old brain is working, tons of blood is drawn (somewhere around 26 tubes), and a brain MRI. This all went fine. After having MS for a few years and doing the transplant, I can't imagine still having issues doing medical 'things.' If at this point, one found these types of things daunting or overwhelming at all, you're in for a long-haul.
The 6-month MRI was the thing that was most important to me and according to Dr. Bowen, it "looks unchanged and unremarkable." I know it's only 6 months, but I really didn't want to hear that there were any new lesions on the MRI - no thanks. So, I was very happy with that news and that was probably the most important thing to me. I'll continue to get brain MRIs at years 1 through 5 to check what I hope will be the 'lack of progress' - at least in the MS department.
I haven't seen exact blood counts lately, but I've had blood drawn every couple of weeks and I figure they'd call if there was anything that was overly concerning to them. I do know that my counts are low (white blood cell count is usually hovering around 3,000 - sometimes more and sometimes less) and that is expected. Because of the T-cell depletion I went through (aka: they kill ALL T-cells in your body and then you don't get ANY back in the graft), the full complement of white blood cells is going to take one to two years. My platelets are normal. My red blood cells are normal. The biggie I'm hoping for is that at 1 year my CD4 (a type of white blood cell) count is > 200. I need to have it over 200 to get my immunizations and booster shots. If you aren't at least 200, then you're unlikely to sero-convert and be protected from the diseases you're getting the shots for (i.e. measles, mumps, rubella, pertussis, diphtheria, tetanus, hepatitis, chicken pox, etc). In addition, it's very rare for a graft to 'not take.' If that were to happen, yikes, then I'd have bigger problems I guess - something I'll wait and worry about later if necessary.
I have been feeling pretty good. I have to remember a couple of things. First, this is the 'HALT' MS study, not the 'cure your MS and zap all your old lesions and repair any past damage' study. So, I still have the 9 brain lesions and 2 spinal cord lesions that I've had. At least as far as they know, they ain't going anywhere. Secondly, I will continue to have any symptoms/deficits that I had prior to the transplant. For example, the numbness/tingling in my arm and the leg weakness that comes and goes, may improve over the next 2 years (or so), but that damage is done. In addition, the lesions are also subject to issues when I get sick (like a sinus infection or cold virus). Even before the study, when I got a cold from one of the kids, I felt like crap. This is called a pseudo-exacerbation. They suck, because you really do feel like crap for about 5-6 weeks for every illness that you had (even if the bug only lasted for a week or so). You kind of get a less, but still very annoying, set of MS symptoms. This problem made Feb, Mar, and April a bit uncomfortable since I got a cold once in each of those three months. Although each virus only lasted about 5-7 days (like it would have been for anybody else), I pretty much felt crappy until late May. Now, since then, I've been healthy and have been feeling good - just back to my usual annoying aches, pains, and 'tingles.' I'm more than happy to live with these 'friends' the rest of my life if I truly am able to 'HALT' the MS and keep it from progressing.
I have to say, I'm so glad I did this study. As Casey and I talk about, the upside of 'halting' the MS is huge and if this type of treatment isn't the answer, well, that's life. And, really, how far set back am I? I'd just be in the same predicament I would have been in if I didn't do the study in the first place. The only difference is I would have had a bit of discomfort to go through to find this out. This is a gamble I would take any day, and do again in a second! Plus, I'm getting to spend some great, fun, and quality time with my kids.
So, as far as the rest of my year goes, I still have some pretty annoying, but very important, restrictions. The biggies are:
NO swimming (well, I can get in the water, but I can't submerge my head in a pool or lake r/t sinus').
NO digging in the soil (I water the plants in the yard, but NO gardening, planting, etc r/t aspergillus, a category of molds that are bad for lungs).
WATCH the sun exposure (I need to be careful and use sunscreen!).
NO home improvement projects (this one hurts!).
And, I still will be watching big crowds and sick people to make sure I'm not putting myself in a vulnerable position. That being said, Casey and I have enjoyed uncrowded pubs, restaurants, the theater (Intiman, 5th Ave, etc), movie theaters, and plenty of outdoor exercise and play at the park. It's nice that it's summer, so that the overall viral load is down with the kids, friends, and all the people I encounter out in public.
One sad thing for me is that my brother, Paul, is getting married this summer in Las Vegas. Unfortunately, I'm not going to be able to go. And, this really stinks, because not only is my brother's wedding important to me, but I love Vegas (and so does Casey). I just couldn't swing the crowds and risk I would find on the plane ride, the casino, and the clubs. In addition, I can't swim in the pool and sitting in the sun is a no-no. I need to be smart about what positions I put myself in and after talking with my doctors, this is one that I should probably avoid, as this whole process is all about long-term gain. I'm really going to miss being a part of Paul's big day, but I know he understands that August in Vegas 8 months after a stem-cell transplant is probably not a good idea for me.
We are going to do a couple of car trips to Winthrop, Wenatchee, and Whistler. Huh, I guess I didn't notice that before, but "W" looks like the theme for the summer. Casey is off for the summer with me and the kids. Jack and Owen are doing a number of camps, playing with friends, and are looking forward to the vacations, especially Whistler (they LOVE it up there in the summer). Also, we'll be playing a lot of baseball and trying to get on our bikes a bit more.
That brings me to the MS Bike Ride in September. I have to tell you that if you'd asked me in Feb if I would be doing that ride this year, I don't even think I could have answered, but just given the look of, huh...are you kidding. BUT, I actually have ridden 3 times in the last 10 days or so and after a 6-plus month layoff and 'recovery' period, I am going to try and get going and do at least 60 miles. The 100 miles might be a bit ambitious, but you never know. So, if I come at you with an email for a few $$$ to help out a great cause, I would love your help and generous support. No amount would be too small. Anyway, we'll see if I have it in me when I get a month or so out from ride day. And, I assure you that the National MS Society would appreciate your help too. I know there are so many great causes out there, but at this point, I'm fighting for one that's pretty personal to me and my family. I'll keep you posted.
I guess that's about it for now. AGAIN, thank you so much to EVERYONE who has supported me this year and sent good vibes, wishes, and prayers my way. It all obviously helped a lot! I'm doing great and looking forward to a summer full of fun, eventually some sun, and a continued smooth recovery. Love to you all. Talk to you in a couple of months unless something medically exciting (or challenging) comes up. If it does, I'll get on here and write an update.
Mike
Tuesday, April 27, 2010
April 2010 - Sorry I'm Late!
Boy o Boy, it's been awhile. Well, I don't want people to think I've fallen into some abyss of pain and discomfort or that I am doing poorly medically, so I wanted to get a blog entry done. I know I'm slacking when I get an email from a friend in So. California asking, "What the hell's going on with you, are you ok? I'm assuming you're still alive because I haven't heard from Casey about anything. Do some blogging, will ya." What I really want to do is write this neuvo-techy person back and say that when I can blog from my iPad using my bluetooth wireless and dictating via my dragon handsfree voice recognition software, then I'll be right there for you. Unfortunately, I don't think any of those devices are in my foreseeable future, so I'm going to just have to log into my iGoogle account, click BLOG and choose NEW POST - I can do that, so here goes. But, at least now I know what equipment and software I will need to be a daily, ultra-successful blogger, so at least there's hope for people like me with CDDD (Communication Device Dysfunction Disorder).
Anyway, the email got me sitting here in this chair and prepared to inform the world of my condition and whereabouts. I tell Casey, "I'm not sure people really want to read all this stuff." And, as Casey reminds me, "Everyone else may not care, but someday you'll care, so get your butt writing." If I'm lucky, she has resigned herself to the fact that 'Mike will never write again,' that way she won't read this post and see what I really think of her --- 'She's always right!' Luckily, I didn't say that too loud and I've even destroyed the scratch paper I jotted it down on - whew, no evidence laying around that might prove I respect and love my wonderful wife more than anyone else in the whole world. Oh, in addition, she just so happens to be right most of the time.
For a quick recap, I've had THREE cold/respiratory infections, one in Feb, Mar and April. The April one was the worst, as I had a ton of the 'gunk' in the chest and a pretty bad cough. But, they didn't do antibiotics and I did finally get over it. Each time I get one of these, and it doesn't drop me, I have to say I get a pretty big emotional lift. I feel like, "I CAN SURVIVE ANYTHING!" Well, maybe not quite that big, but at least I feel good that the immunity I have can keep the common stuff in check pretty well.
The big problem with getting these illnesses is that when I get sick (this also happened every time over the last 2 years, so this isn't new), I feel like crap. When my immune system gears up to fight an infection or illness, my MS lesions take a hit and I get very fatigued, have some sensory problems like pin-prick/itching feelings in arm and some leg weakness with spasticity. I don't think I felt this as much in the past because I was in better shape. Currently, I have had a ton of muscle atrophy over 3-4 months, so I just don't have the reserves I've had in the past. This 'crappy' feeling is quite annoying and usually lasts about 2-3 weeks for every illness, then slowly tapers down to my baseline - which means, I feel pretty good most of the time. Like right now, I was sick in early April and have felt great for about the last couple of weeks. My neurologist says that these are NOT new lesions forming, but he "thinks" they're what they call "pseudo-exacerbations." The immune system response annoys vulnerable tissue in the lesions you already have and voila...you feel your 'crappy MS days' for a little bit until everything settles down. I can live with this, as it's the new lesions I'm trying to avoid. I already have 6 (or 9 depending on who you ask) brain lesions and 2 spinal lesions, so those aren't going anywhere. It would be nice if they got better during the first few years post-transplant, but hey, I'm not complaining, if I can maintain this level of disease, and not progress, count me in!
Got a call last week that my blood counts (White Blood Cell counts = WBC) have been down the last two draws. I was having my blood drawn yesterday and they always want it to be over 3,000 (the WBC that is). I've been down in the 2,000s. Not good enough. Of course, when I say, "Well, if it's still down there, what would we do about it?" I get, "Nothing, we'd just keep watching and hope they come up, there's not much we can do." So, I think, 'then why are you calling me? To tell me that your bone marrow graft stinks and you're not progressing well, but we can't really do anything about it.' I vote for this scenario...don't worry Mike with a phone call about things that there isn't a defined treatment for. If you do, then I'll be out golfing and my usual swing-thought to 'keep your head down Mike, and bring your hands through first' will be over-shadowed by 'geez Mike, your counts sure aren't very good and there's very little you can do about it.' The next sound you heard there was my ball crackling through tree branches as I duck-hooked it into the woods. Please, don't give me any thoughts that might make my golf game any worse than it already is.
But, yesterday my WBC count was 3,400 and they were all sooooo happy. So, that means I'm happy too. I'm shooting for 4,000 next draw - not that there's much I can do about it. I see myself as a prisoner to time...just waiting until the graft matures and your counts improve. In addition, I'm always in pursuit of perfecting my sickness avoidance maneuvers. You know, avoiding unnecessary exposures and staying clear of sick kids, including my own - which isn't easy. All other lab work looked great. I get labs drawn every 2 weeks and see the doctor monthly. I haven't had any growth in the virus department either. My CMV, EBV and JC virus' have been 'non-detectable.'
Things I'm doing consist of kids, house chores, working on my golf game and keeping Casey smiling (you know, daily back massages and all). Pretty much get up in the morning with kids, get them breakfast and then off to school. We try and walk if it's nice and drive in the rain. They don't like walking, but I just play the "Dad just had a bone marrow transplant, so get off your a@@ and walk with me" card. It's pretty effective in getting us out the door on 'walk' days. Then my day usually involves some house cleaning, to do list, picking-up things, stuff for the kids, laundry or hitting some golf balls at the driving range. All of the sudden, it's time to pick up kids again. Owen first, then Jack later in the day. Followed by something to eat and baseball practice or games on Tue, Wed, Fri and Sat. Oh, and soccer on Sun for Jack. Every once in awhile I'll throw in a haircut, some homework, a request to "clean you room please" and even a video now and then. All of the sudden it's shower/bath time and some reading before bed. That pretty much sums up my daily duties, except somewhere in there Casey goes to work and comes home again :) All in all, not a bad deal, I feel pretty darn lucky!!
What's been nice is that Casey and I have had a few nights out. I've also gotten to enjoy a few Guinness', which I've decided are one of the delicious little treats in life. We've made it to Intiman Theatre to watch Paradise Lost. Talk about a must-see for putting things in perspective. I told Casey as we were leaving the performance, "Well, that actually was a pick-me-up because you really don't know how good you have it until you've seen (or read) Paradise Lost." If I could, I would thank Clifford Odets personally for writing it and making my life, and the lives of most of the people I know, seem like a Utopian Garden of Eden. Thanks Cliff.
Lastly, trying to do some planning for some summer driving trips. Still need to avoid airplanes unless absolutely necessary. Going to Whistler for 8 days, but trying to think of another adventure too. We have one more 8 day stretch at the end of July and are mulling between Yellowstone (Jack), Silverwood Amusement Park (Dad), SF Bay area (Casey), Alcatraz (Jack) and any old-west ghost or mining towns (Jack). You probably noticed that Owen doesn't care. Just because he knows all the states and capitals doesn't mean he wants to visit them. Of course, they BOTH want to go to SeaWorld and LegoLand. I wonder if that's because their dad won't stop talking about how much he wants to go there too. But, that trip is going to have to wait for next spring break. In the words of a caveman named Org, Los Angeles is "too far to drive, kids would make me crazy in car that long, must take flying machine." So, once again, we'll wait. Whether it's a trip in a flying machine, good blood counts or a new job for Mike, we'll wait, and be happy doing it.
Love to all and Happy Spring. Mike
Anyway, the email got me sitting here in this chair and prepared to inform the world of my condition and whereabouts. I tell Casey, "I'm not sure people really want to read all this stuff." And, as Casey reminds me, "Everyone else may not care, but someday you'll care, so get your butt writing." If I'm lucky, she has resigned herself to the fact that 'Mike will never write again,' that way she won't read this post and see what I really think of her --- 'She's always right!' Luckily, I didn't say that too loud and I've even destroyed the scratch paper I jotted it down on - whew, no evidence laying around that might prove I respect and love my wonderful wife more than anyone else in the whole world. Oh, in addition, she just so happens to be right most of the time.
For a quick recap, I've had THREE cold/respiratory infections, one in Feb, Mar and April. The April one was the worst, as I had a ton of the 'gunk' in the chest and a pretty bad cough. But, they didn't do antibiotics and I did finally get over it. Each time I get one of these, and it doesn't drop me, I have to say I get a pretty big emotional lift. I feel like, "I CAN SURVIVE ANYTHING!" Well, maybe not quite that big, but at least I feel good that the immunity I have can keep the common stuff in check pretty well.
The big problem with getting these illnesses is that when I get sick (this also happened every time over the last 2 years, so this isn't new), I feel like crap. When my immune system gears up to fight an infection or illness, my MS lesions take a hit and I get very fatigued, have some sensory problems like pin-prick/itching feelings in arm and some leg weakness with spasticity. I don't think I felt this as much in the past because I was in better shape. Currently, I have had a ton of muscle atrophy over 3-4 months, so I just don't have the reserves I've had in the past. This 'crappy' feeling is quite annoying and usually lasts about 2-3 weeks for every illness, then slowly tapers down to my baseline - which means, I feel pretty good most of the time. Like right now, I was sick in early April and have felt great for about the last couple of weeks. My neurologist says that these are NOT new lesions forming, but he "thinks" they're what they call "pseudo-exacerbations." The immune system response annoys vulnerable tissue in the lesions you already have and voila...you feel your 'crappy MS days' for a little bit until everything settles down. I can live with this, as it's the new lesions I'm trying to avoid. I already have 6 (or 9 depending on who you ask) brain lesions and 2 spinal lesions, so those aren't going anywhere. It would be nice if they got better during the first few years post-transplant, but hey, I'm not complaining, if I can maintain this level of disease, and not progress, count me in!
Got a call last week that my blood counts (White Blood Cell counts = WBC) have been down the last two draws. I was having my blood drawn yesterday and they always want it to be over 3,000 (the WBC that is). I've been down in the 2,000s. Not good enough. Of course, when I say, "Well, if it's still down there, what would we do about it?" I get, "Nothing, we'd just keep watching and hope they come up, there's not much we can do." So, I think, 'then why are you calling me? To tell me that your bone marrow graft stinks and you're not progressing well, but we can't really do anything about it.' I vote for this scenario...don't worry Mike with a phone call about things that there isn't a defined treatment for. If you do, then I'll be out golfing and my usual swing-thought to 'keep your head down Mike, and bring your hands through first' will be over-shadowed by 'geez Mike, your counts sure aren't very good and there's very little you can do about it.' The next sound you heard there was my ball crackling through tree branches as I duck-hooked it into the woods. Please, don't give me any thoughts that might make my golf game any worse than it already is.
But, yesterday my WBC count was 3,400 and they were all sooooo happy. So, that means I'm happy too. I'm shooting for 4,000 next draw - not that there's much I can do about it. I see myself as a prisoner to time...just waiting until the graft matures and your counts improve. In addition, I'm always in pursuit of perfecting my sickness avoidance maneuvers. You know, avoiding unnecessary exposures and staying clear of sick kids, including my own - which isn't easy. All other lab work looked great. I get labs drawn every 2 weeks and see the doctor monthly. I haven't had any growth in the virus department either. My CMV, EBV and JC virus' have been 'non-detectable.'
Things I'm doing consist of kids, house chores, working on my golf game and keeping Casey smiling (you know, daily back massages and all). Pretty much get up in the morning with kids, get them breakfast and then off to school. We try and walk if it's nice and drive in the rain. They don't like walking, but I just play the "Dad just had a bone marrow transplant, so get off your a@@ and walk with me" card. It's pretty effective in getting us out the door on 'walk' days. Then my day usually involves some house cleaning, to do list, picking-up things, stuff for the kids, laundry or hitting some golf balls at the driving range. All of the sudden, it's time to pick up kids again. Owen first, then Jack later in the day. Followed by something to eat and baseball practice or games on Tue, Wed, Fri and Sat. Oh, and soccer on Sun for Jack. Every once in awhile I'll throw in a haircut, some homework, a request to "clean you room please" and even a video now and then. All of the sudden it's shower/bath time and some reading before bed. That pretty much sums up my daily duties, except somewhere in there Casey goes to work and comes home again :) All in all, not a bad deal, I feel pretty darn lucky!!
What's been nice is that Casey and I have had a few nights out. I've also gotten to enjoy a few Guinness', which I've decided are one of the delicious little treats in life. We've made it to Intiman Theatre to watch Paradise Lost. Talk about a must-see for putting things in perspective. I told Casey as we were leaving the performance, "Well, that actually was a pick-me-up because you really don't know how good you have it until you've seen (or read) Paradise Lost." If I could, I would thank Clifford Odets personally for writing it and making my life, and the lives of most of the people I know, seem like a Utopian Garden of Eden. Thanks Cliff.
Lastly, trying to do some planning for some summer driving trips. Still need to avoid airplanes unless absolutely necessary. Going to Whistler for 8 days, but trying to think of another adventure too. We have one more 8 day stretch at the end of July and are mulling between Yellowstone (Jack), Silverwood Amusement Park (Dad), SF Bay area (Casey), Alcatraz (Jack) and any old-west ghost or mining towns (Jack). You probably noticed that Owen doesn't care. Just because he knows all the states and capitals doesn't mean he wants to visit them. Of course, they BOTH want to go to SeaWorld and LegoLand. I wonder if that's because their dad won't stop talking about how much he wants to go there too. But, that trip is going to have to wait for next spring break. In the words of a caveman named Org, Los Angeles is "too far to drive, kids would make me crazy in car that long, must take flying machine." So, once again, we'll wait. Whether it's a trip in a flying machine, good blood counts or a new job for Mike, we'll wait, and be happy doing it.
Love to all and Happy Spring. Mike
Tuesday, March 16, 2010
March update
Hello All;
I've had a few weeks of not feeling super-great. Not really feeling terrible, but just not my best. I've had a slight chest cold (not sure if it's a second illness or just a continuation of my cold in February?) and some mild MS symptoms. I can't say it stops me from doing many things, except strenuous stuff like biking and running with the kids. But, I think back a year or so and realize how much worse I've felt in the past. When I do this, a little weakness and a few aches doesn't seem so bad. It's weird how you treat your various 'discomforts' when you have MS. I think if someone ever woke up feeling like I have the last couple of weeks, they'd be freaking out, call in to work sick, and be at the doctors office by 9:20 am. Now, this is not to make me sound tougher, or cooler, than others, but just point out that with the MS, you just take each morning as it comes. I kind of open one eye, open the other eye, then reach over to turn on the radio for the news and in that couple of minutes, my brain has done a full body assessment on the level of ache, itch, spasm, or tingling that I am starting the day with. Heck, it's a good day if your arm itches less and your legs aren't aching as much as the day before. It's funny what you can get used to.
Now, keep in mind that I had been feeling great until just a few weeks ago. All through Jan and early Feb, I was cruising. I really only had been having mild itching in my right arm (pretty minimal and very normal for me). I had been walking, biking, playing baseball, etc. Yesterday, I had my usual appointment with my neurologist, Dr. Bowen. Of course I wanted to know if it was bad that I was having an exacerbation like this since having the stem-cell transplant? He explained that I am most likely having a "pseudo-exacerbation" related to me being sick. When someone with MS gets sick or a fever, they can have some of their 'usual' symptoms, only a bit milder. I kind of figured this was the case, as each time I've been sick in the last year I get this same thing. But, my concern was that this was related to 'new' lesions or increasing activity with my current lesions. He assured me that I probably will continue this trend of feeling crappy when I get sick, and feel as I did in January when I'm not sick, but that does not mean my lesions are 'active' or that I have increased MS activity or anything. He reminded me that the goal of the HALT-MS Study is to 'halt' the MS. So, those lesions I have are there. They may heal some over time and I may feel less of these pseudo-exacerbations over time, but the goal is not to get any worse. I may even have some healing of my current lesions over the next few years. His explanation sounded pretty good to me.
Nobody can tell you how the stem-cell transplant will change, halt, hinder, curb, slow down, or stop the progression of your MS, but I often think of the path I would be on if I hadn't had this chance to do it. The likelihood is that I would have a slow progression of my disease, leading, over the years, to progressively greater disabilities, so you can't imagine how blessed and lucky I feel to have gotten this opportunity to be in the HALT-MS study. The upside is huge. Think about 15 years from now having NO problems with increasing MS symptoms and not having to be on medication. On the other hand, if in 3 to 5 years, this treatment doesn't prove to be 'the answer,' well, how much worse off am I than if I didn't try it? I'll bet not much. I am so happy with my decision and the outcome so far. I just have to remember that when I've gotten these little 'episodes' in the past, they last for about 2 weeks and just sort of fade away. And, I'm already feeling better than I did last week, so I should be back to my January routine in no time.
Blood count numbers continue to look good. Some of my counts were down a bit, but that's probably just because I have been a little sick. The virus' they check for (JC, EBV, and CMV) have been negative. I am off of my anti-fungal (Diflucan). I will continue the anti-viral and anti-bacterial for a full year. My hair is growing back. Kind of wimpy, but at least it's coming in. I'll probably get a trim next week just to keep it 'fresh' around the ears and back of the neck - plus, Casey asked me to. I am now on a schedule of weekly blood draws and I see the oncologist every other week. Next week I'll be at Day +100. I'm really looking forward to that milestone from purely a psychological standpoint.
As far as life at home goes, I've been a little disappointed with my performance in the kitchen. I thought I would become this great cook and all. But, I seem to just be cooking the same old thing. I did make some awesome chicken tikka marsala a few weeks ago, but my pasta fagioli and gourmet meatloaf were kind of subpar. Speaking of par, I've also been distracted by golfing. I've been trying to get my golf game going and I actually have a pretty sore shoulder from hitting too many range balls. I guess I have to choose between golf and cooking. Hmmmm, let me see, what would I rather do, spend 2 hours cutting up various ingredients to cook something I can't pronounce, or be outside, breathing fresh air, riding a golf cart around, and hitting a ball around a beautifully manicured golf course? FORE!
Kids and Casey are doing great. Jack is playing baseball and loves it! I think he likes it better than soccer. He is enjoying riding his bike, continues to do choir at school, and has moved up to 6th on the depth chart in chess club. Owen is as cute and stubborn as ever. He is thriving at Zoom (his Spanish immersion preschool) and loves writing letters and words. He's beginning to write in cursive and is also is reading us simple books. He knows all the states and capitals too. He's pretty amazing. Casey is teaching 1/2 day at Clyde Hill elementary. She enjoys the school and her schedule - at least until they put a toll on the 520 bridge. And, I have to say, I think they're happy to have me home. :) And, I'm happy to be home.
It's a great 'sports' time of the year too. Three of the four best things in sports are just around the corner. The Super Bowl has passed, but in the next month I can look forward to the Mariner's Opening Day, the NCAA Tournament, and The Master's. The Master's doesn't usually make this list, usually it's the big three (Super Bowl, NCAA Tournament and Mariner's Opening Day), but it vaulted up there this year because Tiger's back. What a zoo it's gonna be, I can't wait. He's so pathetic, I can't wait to see what he says next and what the fan response is to him. I guess you don't have to necessarily respect someone as a person to respect their golf game - we'll see.
Also, a quick weather observation. I can't believe how mild our winter has been. It's strange to watch snow, freezing cold, and flooding rains back east and it was 60some degrees her yesterday. Oh well, I guess we've had our bad years too.
Finally, I hope all is well with you and I personally want to thank everyone who donated $$$ to Casey or Jack for the MS Walk. Jack was so excited about raising money and checks his site everyday. Thank you grandma Helen for steering your generous friends Jack's way, he sure appreciates it. I know there are many many important causes out there, but if I'm not walking proof of the progress being made in the fight against MS, then I'm not sure what I can say. The walk is on Sunday, April 11th and we'd love to have anyone come out and walk with us - no need to officially sign up. We meet at Husky Stadium and walk the Burke-Gilman trail - it's only a couple of hours total. Call Casey or me if you'd like to meet up with us. We'd love to see you out there. Thank you again for wonderful support, be it $$$ in a donation or kind words/thoughts by email. It is truly appreciated greatly!!
Take care, Mike
I've had a few weeks of not feeling super-great. Not really feeling terrible, but just not my best. I've had a slight chest cold (not sure if it's a second illness or just a continuation of my cold in February?) and some mild MS symptoms. I can't say it stops me from doing many things, except strenuous stuff like biking and running with the kids. But, I think back a year or so and realize how much worse I've felt in the past. When I do this, a little weakness and a few aches doesn't seem so bad. It's weird how you treat your various 'discomforts' when you have MS. I think if someone ever woke up feeling like I have the last couple of weeks, they'd be freaking out, call in to work sick, and be at the doctors office by 9:20 am. Now, this is not to make me sound tougher, or cooler, than others, but just point out that with the MS, you just take each morning as it comes. I kind of open one eye, open the other eye, then reach over to turn on the radio for the news and in that couple of minutes, my brain has done a full body assessment on the level of ache, itch, spasm, or tingling that I am starting the day with. Heck, it's a good day if your arm itches less and your legs aren't aching as much as the day before. It's funny what you can get used to.
Now, keep in mind that I had been feeling great until just a few weeks ago. All through Jan and early Feb, I was cruising. I really only had been having mild itching in my right arm (pretty minimal and very normal for me). I had been walking, biking, playing baseball, etc. Yesterday, I had my usual appointment with my neurologist, Dr. Bowen. Of course I wanted to know if it was bad that I was having an exacerbation like this since having the stem-cell transplant? He explained that I am most likely having a "pseudo-exacerbation" related to me being sick. When someone with MS gets sick or a fever, they can have some of their 'usual' symptoms, only a bit milder. I kind of figured this was the case, as each time I've been sick in the last year I get this same thing. But, my concern was that this was related to 'new' lesions or increasing activity with my current lesions. He assured me that I probably will continue this trend of feeling crappy when I get sick, and feel as I did in January when I'm not sick, but that does not mean my lesions are 'active' or that I have increased MS activity or anything. He reminded me that the goal of the HALT-MS Study is to 'halt' the MS. So, those lesions I have are there. They may heal some over time and I may feel less of these pseudo-exacerbations over time, but the goal is not to get any worse. I may even have some healing of my current lesions over the next few years. His explanation sounded pretty good to me.
Nobody can tell you how the stem-cell transplant will change, halt, hinder, curb, slow down, or stop the progression of your MS, but I often think of the path I would be on if I hadn't had this chance to do it. The likelihood is that I would have a slow progression of my disease, leading, over the years, to progressively greater disabilities, so you can't imagine how blessed and lucky I feel to have gotten this opportunity to be in the HALT-MS study. The upside is huge. Think about 15 years from now having NO problems with increasing MS symptoms and not having to be on medication. On the other hand, if in 3 to 5 years, this treatment doesn't prove to be 'the answer,' well, how much worse off am I than if I didn't try it? I'll bet not much. I am so happy with my decision and the outcome so far. I just have to remember that when I've gotten these little 'episodes' in the past, they last for about 2 weeks and just sort of fade away. And, I'm already feeling better than I did last week, so I should be back to my January routine in no time.
Blood count numbers continue to look good. Some of my counts were down a bit, but that's probably just because I have been a little sick. The virus' they check for (JC, EBV, and CMV) have been negative. I am off of my anti-fungal (Diflucan). I will continue the anti-viral and anti-bacterial for a full year. My hair is growing back. Kind of wimpy, but at least it's coming in. I'll probably get a trim next week just to keep it 'fresh' around the ears and back of the neck - plus, Casey asked me to. I am now on a schedule of weekly blood draws and I see the oncologist every other week. Next week I'll be at Day +100. I'm really looking forward to that milestone from purely a psychological standpoint.
As far as life at home goes, I've been a little disappointed with my performance in the kitchen. I thought I would become this great cook and all. But, I seem to just be cooking the same old thing. I did make some awesome chicken tikka marsala a few weeks ago, but my pasta fagioli and gourmet meatloaf were kind of subpar. Speaking of par, I've also been distracted by golfing. I've been trying to get my golf game going and I actually have a pretty sore shoulder from hitting too many range balls. I guess I have to choose between golf and cooking. Hmmmm, let me see, what would I rather do, spend 2 hours cutting up various ingredients to cook something I can't pronounce, or be outside, breathing fresh air, riding a golf cart around, and hitting a ball around a beautifully manicured golf course? FORE!
Kids and Casey are doing great. Jack is playing baseball and loves it! I think he likes it better than soccer. He is enjoying riding his bike, continues to do choir at school, and has moved up to 6th on the depth chart in chess club. Owen is as cute and stubborn as ever. He is thriving at Zoom (his Spanish immersion preschool) and loves writing letters and words. He's beginning to write in cursive and is also is reading us simple books. He knows all the states and capitals too. He's pretty amazing. Casey is teaching 1/2 day at Clyde Hill elementary. She enjoys the school and her schedule - at least until they put a toll on the 520 bridge. And, I have to say, I think they're happy to have me home. :) And, I'm happy to be home.
It's a great 'sports' time of the year too. Three of the four best things in sports are just around the corner. The Super Bowl has passed, but in the next month I can look forward to the Mariner's Opening Day, the NCAA Tournament, and The Master's. The Master's doesn't usually make this list, usually it's the big three (Super Bowl, NCAA Tournament and Mariner's Opening Day), but it vaulted up there this year because Tiger's back. What a zoo it's gonna be, I can't wait. He's so pathetic, I can't wait to see what he says next and what the fan response is to him. I guess you don't have to necessarily respect someone as a person to respect their golf game - we'll see.
Also, a quick weather observation. I can't believe how mild our winter has been. It's strange to watch snow, freezing cold, and flooding rains back east and it was 60some degrees her yesterday. Oh well, I guess we've had our bad years too.
Finally, I hope all is well with you and I personally want to thank everyone who donated $$$ to Casey or Jack for the MS Walk. Jack was so excited about raising money and checks his site everyday. Thank you grandma Helen for steering your generous friends Jack's way, he sure appreciates it. I know there are many many important causes out there, but if I'm not walking proof of the progress being made in the fight against MS, then I'm not sure what I can say. The walk is on Sunday, April 11th and we'd love to have anyone come out and walk with us - no need to officially sign up. We meet at Husky Stadium and walk the Burke-Gilman trail - it's only a couple of hours total. Call Casey or me if you'd like to meet up with us. We'd love to see you out there. Thank you again for wonderful support, be it $$$ in a donation or kind words/thoughts by email. It is truly appreciated greatly!!
Take care, Mike
Tuesday, February 23, 2010
I am a certifiable (is that a word) blog slacker!
If anyone still tunes in to read, sorry about the delays in blog updates. I'd just like to say, "My name is Mike Kearny, and I have a problem writing in my blog." Not sure exactly why, but I think I'll at least stop making promises and I'll just try and get something in writing as often as I can. I'm sure most of you can see why I could never maintain a Facebook account. My secret fear is that I would be 'friendless' related to my inconspicuous absence from keeping my 'page' up to date. But, if this blog is going to be a chronicle of my stem cell transplant journey, I better step it up.
Anyway, I'm feeling good. You heard about my "mild" cold in the last blog entry. Well, it ended up turning into a pretty gunky cough that lasted more than a week. Much better now and it actually made me feel relieved to get something and then get over it without any big problems. It didn't seem any worse than a cough I would normally get in the winter. I had this fear that any illness I got would "take me out." As paranoid as that sounds, it's kind of hard not to have bad thoughts in the back of your mind when you're so immunosuppressed. This irrational thought is all related to how they educate you about your "vulnerability" and all the precautions you need to take. Not to mention all the blood work to check for various virus', etc. So, it was truly a relief to get sick and come through it well.
All of my lab counts and numbers continue to look good. I think I am Day +67 today. Still having weekly blood draws and my doctor appts have gone to monthly (unless needed more often). At Day +100 I will go to every other week blood draws. Still on the same medications. I am actually only on three meds, so it's not too many. I go off of them one at a time starting at Day +100 (Bye Bye Diflucan), 6 months (Adios Bactrim), and then the final one at one year (Sayonara Valtrex).
The hardest thing for me is to try and remember that I'm only two months out from a stem cell transplant - and to take it easy! I really don't have any fatigue or pain, and I'm eating well, but I just don't have the strength, especially in my legs, that I'm used to. I blame this more on the Prednisone (which I have been off since mid-Jan) more than the chemo. I get a bit frustrated by this, but then I am reminded by my doctors AND CASEY that I am doing very well and need to make sure I'm taking it slowly. But, mostly, I am able to do what I want (except my two favorite things, gardening and home improvement projects). I'm walking a lot every day. I think I know the construction schedule and progress of every home improvement project in the Wallingford, Green Lake, and Phinney Ridge neighborhoods. I took the kids on a hike at Cougar Mt. last Saturday - they did great. I was actually surprised because we did 4 miles and a fair bit of climbing with only the smallest amount of whining at the very end. I thought this was excellent considering it was Owen's first real hike. Can't wait to get out this summer and find some more exciting trails with the kids. I also went on a bike ride Sunday and I definitely felt EVERY mile. I used to go 50 miles without needing any food or water, and now 26 flat miles on the Burke-Gilman Trail was quite strenuous. This is the event that helped me see that I should probably go a bit slower and not be in such a hurry - heck, I'm not even at the three month mark yet.
I think I was feeling like the amount of stuff I was doing was a barometer for how WELL I was doing. You know, that the amount of exercise I was doing was directly proportional to my progress. I guess that's kind of silly to think that way, so I'm going to try to go a bit slower. I was going to take Jack to a in-line skating class this Saturday, but maybe I'll hold off for a few weeks. And I might wait until next year to take up skate skiing (I've wanted to do this for a long time and the Olympics has gotten me psyched). Anyway, I think I can wait a year. As the old Irish proverb says, 'Patience is a virtue.' Since I hear this from Casey on a pretty regular basis, maybe she actually has more Irish in her than I thought.
Other things going on include deciding on summer camps for kids. The discussion is based on prioritizing favorites and talking about what can we actually afford this year. They really love many of the camps and fun events they get to do at them, so we're going to make sure they get to a couple of them. Owen will get to go to language camp at Jack's school, so he'll be excited about that. I can't believe he's gong to be a big kindergartner next fall. Also, we are planning a couple of trips, by car only (no airplanes yet), to Wenatchee and Whistler. School is going well for Owen and Jack, both are amazingly fluent in Spanish. I love listening to them. Baseball starts soon too. Jack will be in kid-pitch and Owen will be doing T-ball for the first time.
I better go because I have to make some calls to the SCCA social worker, the SCCA business office, and Premera Insurance. They're a whole other story. What a pain in the you-know-what they've become. Oh well, thank goodness for Regence and COBRA. And, I can't say enough good things about the Seattle Cancer Care Alliance (SCCA) and every single one of the people I have met there!! You talk about people who are truly interested in helping people, and genuinely care about YOU, this is the place. So, I'm off to terminal hold with Premera customer service. Until next time, cheers and happy spring.
Take care. Mike
Anyway, I'm feeling good. You heard about my "mild" cold in the last blog entry. Well, it ended up turning into a pretty gunky cough that lasted more than a week. Much better now and it actually made me feel relieved to get something and then get over it without any big problems. It didn't seem any worse than a cough I would normally get in the winter. I had this fear that any illness I got would "take me out." As paranoid as that sounds, it's kind of hard not to have bad thoughts in the back of your mind when you're so immunosuppressed. This irrational thought is all related to how they educate you about your "vulnerability" and all the precautions you need to take. Not to mention all the blood work to check for various virus', etc. So, it was truly a relief to get sick and come through it well.
All of my lab counts and numbers continue to look good. I think I am Day +67 today. Still having weekly blood draws and my doctor appts have gone to monthly (unless needed more often). At Day +100 I will go to every other week blood draws. Still on the same medications. I am actually only on three meds, so it's not too many. I go off of them one at a time starting at Day +100 (Bye Bye Diflucan), 6 months (Adios Bactrim), and then the final one at one year (Sayonara Valtrex).
The hardest thing for me is to try and remember that I'm only two months out from a stem cell transplant - and to take it easy! I really don't have any fatigue or pain, and I'm eating well, but I just don't have the strength, especially in my legs, that I'm used to. I blame this more on the Prednisone (which I have been off since mid-Jan) more than the chemo. I get a bit frustrated by this, but then I am reminded by my doctors AND CASEY that I am doing very well and need to make sure I'm taking it slowly. But, mostly, I am able to do what I want (except my two favorite things, gardening and home improvement projects). I'm walking a lot every day. I think I know the construction schedule and progress of every home improvement project in the Wallingford, Green Lake, and Phinney Ridge neighborhoods. I took the kids on a hike at Cougar Mt. last Saturday - they did great. I was actually surprised because we did 4 miles and a fair bit of climbing with only the smallest amount of whining at the very end. I thought this was excellent considering it was Owen's first real hike. Can't wait to get out this summer and find some more exciting trails with the kids. I also went on a bike ride Sunday and I definitely felt EVERY mile. I used to go 50 miles without needing any food or water, and now 26 flat miles on the Burke-Gilman Trail was quite strenuous. This is the event that helped me see that I should probably go a bit slower and not be in such a hurry - heck, I'm not even at the three month mark yet.
I think I was feeling like the amount of stuff I was doing was a barometer for how WELL I was doing. You know, that the amount of exercise I was doing was directly proportional to my progress. I guess that's kind of silly to think that way, so I'm going to try to go a bit slower. I was going to take Jack to a in-line skating class this Saturday, but maybe I'll hold off for a few weeks. And I might wait until next year to take up skate skiing (I've wanted to do this for a long time and the Olympics has gotten me psyched). Anyway, I think I can wait a year. As the old Irish proverb says, 'Patience is a virtue.' Since I hear this from Casey on a pretty regular basis, maybe she actually has more Irish in her than I thought.
Other things going on include deciding on summer camps for kids. The discussion is based on prioritizing favorites and talking about what can we actually afford this year. They really love many of the camps and fun events they get to do at them, so we're going to make sure they get to a couple of them. Owen will get to go to language camp at Jack's school, so he'll be excited about that. I can't believe he's gong to be a big kindergartner next fall. Also, we are planning a couple of trips, by car only (no airplanes yet), to Wenatchee and Whistler. School is going well for Owen and Jack, both are amazingly fluent in Spanish. I love listening to them. Baseball starts soon too. Jack will be in kid-pitch and Owen will be doing T-ball for the first time.
I better go because I have to make some calls to the SCCA social worker, the SCCA business office, and Premera Insurance. They're a whole other story. What a pain in the you-know-what they've become. Oh well, thank goodness for Regence and COBRA. And, I can't say enough good things about the Seattle Cancer Care Alliance (SCCA) and every single one of the people I have met there!! You talk about people who are truly interested in helping people, and genuinely care about YOU, this is the place. So, I'm off to terminal hold with Premera customer service. Until next time, cheers and happy spring.
Take care. Mike
Friday, February 12, 2010
Happy Valentine's Weekend.
I just took a nice long walk and decided when I get home I better write something in the blog. So, here I am. I know it's often a week or more between posts, but my recovery has just not been that exciting - there's not much going on. This, in turn, translates into not a whole lot to write about. I was definitely expecting a lot more 'things' and/or 'issues' to come up that I could address in a blog. But, that being said, I'll fill you in the best I can on the excitement surrounding the stem-cell transplant and the Kearny/Castaneda family.
First of all, I have my first cold. I started getting a sore throat on Monday night and it progressed to a mild congestion, rare dry cough, and a slight headache. Right now I just have an occassional cough and a little bit of a runny nose. Really not to bad, I have to say that I probably have (at least so far) gotten less sick with this cold than other colds in the past. I was a bit worried about the first illness I was going to get (I knew I was going to get something eventually), wondering would I get really sick because of my immune system - or, just what would happen. I have to say I'm glad I got a mild cold and seem to be doing pretty well with it. It's good for the state of mind if you know what I mean - it's nice to know that my body can handle a normal cold.
I was going to go home last Sunday, but then Owen was sick and Jack had a couple of very light sniffles too. I've been spending a lot of time with them, so I probably picked up the bug from Owen. I'd trade a cold for hanging out with Owen anytime, he's such a cutie-pie. Owen ended up having a double ear infection and conjuctivitis (eye infection), so he's on antibiotics. So, if his sniffles are pretty much gone, I think I'll try and go home on Sunday (yep, in two days).
My visits to the doctor continue to be weekly and my counts have been good. I get my blood drawn and then have the appointment. Often the lab results aren't back yet, so I always figure it's a good thing when in the next day or two I don't get a phone call from the nurse. In other words, no call is good news. I'm confident that they would call me if something bad showed up on my labwork - at least I hope so.
I feel pretty strong and continue to walk quite a bit. The cold slowed down my other work-out regime a bit, but hopefully I'll start that back up once I get home. I don't want to get off the 'work-out wagon' because once I fall off, it's often hard to get back on. Whereas, if I just keep up a consistent routine, I can usually stick with it.
One thing that was kind of weird was that I was (and still am) having some stomach aching when I drank a lot of milk (or ice cream...boo hoo). They are telling me that the chemo I had disrupts the lining of the digestive tract and often afterwards, people have trouble digesting milk for a few months. I guess dairy products are one of the more difficult things for your body to digest. So, I'm taking it easy on glasses of milk and ice cream. Seem to do pretty well with cheese on pizza and in my eggs, as well as yogurt. They assure me that I'll be eating my usual pint of Ben & Jerry's ice cream by springtime. Anyway, as you can see, not too much exciting. I truly feel like I am doing well and feel very good.
My only complaints these days are that I would like to get home, and that's coming very soon. And, dealing with the Premera insurance company, but that's a whole other story. So, a Happy Valentine's Day to everyone. Spring is just around the corner. As I've said earlier, it always feels like February goes so fast - I love it. So nice to get out of the long month of January. I'll look forward to talking with you all soon. Take care, Mike
First of all, I have my first cold. I started getting a sore throat on Monday night and it progressed to a mild congestion, rare dry cough, and a slight headache. Right now I just have an occassional cough and a little bit of a runny nose. Really not to bad, I have to say that I probably have (at least so far) gotten less sick with this cold than other colds in the past. I was a bit worried about the first illness I was going to get (I knew I was going to get something eventually), wondering would I get really sick because of my immune system - or, just what would happen. I have to say I'm glad I got a mild cold and seem to be doing pretty well with it. It's good for the state of mind if you know what I mean - it's nice to know that my body can handle a normal cold.
I was going to go home last Sunday, but then Owen was sick and Jack had a couple of very light sniffles too. I've been spending a lot of time with them, so I probably picked up the bug from Owen. I'd trade a cold for hanging out with Owen anytime, he's such a cutie-pie. Owen ended up having a double ear infection and conjuctivitis (eye infection), so he's on antibiotics. So, if his sniffles are pretty much gone, I think I'll try and go home on Sunday (yep, in two days).
My visits to the doctor continue to be weekly and my counts have been good. I get my blood drawn and then have the appointment. Often the lab results aren't back yet, so I always figure it's a good thing when in the next day or two I don't get a phone call from the nurse. In other words, no call is good news. I'm confident that they would call me if something bad showed up on my labwork - at least I hope so.
I feel pretty strong and continue to walk quite a bit. The cold slowed down my other work-out regime a bit, but hopefully I'll start that back up once I get home. I don't want to get off the 'work-out wagon' because once I fall off, it's often hard to get back on. Whereas, if I just keep up a consistent routine, I can usually stick with it.
One thing that was kind of weird was that I was (and still am) having some stomach aching when I drank a lot of milk (or ice cream...boo hoo). They are telling me that the chemo I had disrupts the lining of the digestive tract and often afterwards, people have trouble digesting milk for a few months. I guess dairy products are one of the more difficult things for your body to digest. So, I'm taking it easy on glasses of milk and ice cream. Seem to do pretty well with cheese on pizza and in my eggs, as well as yogurt. They assure me that I'll be eating my usual pint of Ben & Jerry's ice cream by springtime. Anyway, as you can see, not too much exciting. I truly feel like I am doing well and feel very good.
My only complaints these days are that I would like to get home, and that's coming very soon. And, dealing with the Premera insurance company, but that's a whole other story. So, a Happy Valentine's Day to everyone. Spring is just around the corner. As I've said earlier, it always feels like February goes so fast - I love it. So nice to get out of the long month of January. I'll look forward to talking with you all soon. Take care, Mike
Saturday, January 30, 2010
Hello February 2010.
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
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
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
Subscribe to:
Posts (Atom)
