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
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