We are into the home stretch! 5 weeks to go and I hope to never NEVER talk about a marathon again! I have realized that I am never going to be the poster child for running. I am never going to love it, embrace it, or want to be one with it. I haven't even had visions of playing the saxaphone this time around! What I am glad for is what it brings to Lew - I hope you have heard his good news - if not, here it is:
his "CD3+ T-cells 71% donor origin (29% host)
CD33+ myeloid cells 100% donor origin (0% host). Additionally, I was told that myeloma cells (the cancer cells) are undetectable in my bone marrow by flow cytometry. I think this is very good! I don't believe it means I am cured, but it bodes well."
When I heard this news, I immediately asked Lew if I could quit running now and he said, "NO!" Darn, I would have gladly gone outside and thrown my running shoes into traffic!
OK, so this week is a big one! We will be at the Orting Trail going for 240 minutes - this should translate to 18 miles! Yikes, I'm a little nervous given my last weeks events but I am going to try and put all that behind me and move forward - really, what else can I do?! By the way, I did get an apology from my coach for my last big run so I am really hoping things will go well. Thank you to everyone who called, emailed or FB'd all your support - I am truly hanging on your every word to get this done!
I just realized, by the time we get done training I will have done 6 half marathons-wow! Amazing!
Today was an exceptionally good training day. Tuesdays can sometimes be hard if Jack wants a little more attention during my treadmill time. Today my run was going great and he was doing great as well. I had my ipod on because somehow Sid the Science Kid or Little Einsteins just doesn't exactly inspire me to run. I saw him run out of the room and then come back. Hmm. I wonder what he was doing? Again he runs out and comes back a short time later...this time not wearing any clothes. OK, things could be worse. A naked 3 year old isn't the end of the world. He even went potty all by himself (I sure hope he washed his hands!) My run is going so good, right now I don't care if he wants to watch the rest of Little Einsteins totally in the buff. Then he leaves the room again. This time he comes back with my make-up brushes in his hands rubbing them all over his butt, "Mommy, is it OK if I rub these on my bottom?" I just smiled and said, "sure". Note to self: get new make-up brushes and it was worth one great run!
Tuesday, March 24, 2009
Sunday, March 15, 2009
The good, the bad and the pissed off...
The Good: Well, its Rose and Lew, of course! My very dear good friends came out and braved the cold and torrents of rain to cheer on my entire team! Today was our longest run yet and Lew and Rose started us off with a pep talk and explained how the funds we are raising really do benefit patients just like him. Lew's doctors have told him, "we just need to buy time so we can make this a chronic disease, not a deadly one". Exactly what we needed to hear to get us going and mentally get us to that spot to succeed. (I was taking it all in, so much so, that I didn't snap a single picture!) Lew and Rose were next off to the water stops. It was wonderfully cheerful having them supply us water, Gatorade and salt. Rose, the eternal optimist, was also sprinkling us with "drops of sunshine"! She is a hoot! My asst. coach, Laura, has always commented on what good friends I have and today once again proved I am blessed in so many ways!
The Bad: Rain, cold, wind and shoes filled with water and pebbles. It's hard to complain when you've got such good friends cheering you on - so enough of the bad!
The Pissed Off: That's me, the pissed off one. I had hoped to be blogging about my successful 16 mile run. Unfortunately I cannot . Why you ask? Was it because I was unwilling? NO! Was it because I couldn't do it? NO! Was it because my legs fell off or the sidewalks closed down or the earth stopped spinning? NO! NO! NO!
It was because my coach, David, sagged me at 14.5 miles! What, you say?! Sagged on your practice run? Sagged while preparing your mental game?! Sagged with energy to spare?! What's up with that?!!
Good question! I have that same question! His excuse: "time's up" and then he went on with this: "it could be detrimental to your body to be on your feet this long" (oh please, I did 52 hours of labor - all standing!) His next line: "I could get in trouble as a coach if I allow you to go on" "its Team in Training national standards of coaching". Whatever-not buying it! I think the worst part is that my coaches have spent a significant amount of time telling us that we are getting down to the mental game and then the jerk sags me! Why didn't he just come right out and say "you can't do it" or "I just wanted you to get a taste of what the sag wagon will feel like at your marathon" - jerk.
Never, in my life, did I ever imagine I would be begging to keep running! But also, never, in my life, did I ever imagine I would feel like a failure after 14.5 miles. I also never imagined that I would be so mad after a practice that not a single muscle in my body hurt - the only pain I had was to the psyche.
The rest of the season is going to be interesting...
The Bad: Rain, cold, wind and shoes filled with water and pebbles. It's hard to complain when you've got such good friends cheering you on - so enough of the bad!
The Pissed Off: That's me, the pissed off one. I had hoped to be blogging about my successful 16 mile run. Unfortunately I cannot . Why you ask? Was it because I was unwilling? NO! Was it because I couldn't do it? NO! Was it because my legs fell off or the sidewalks closed down or the earth stopped spinning? NO! NO! NO!
It was because my coach, David, sagged me at 14.5 miles! What, you say?! Sagged on your practice run? Sagged while preparing your mental game?! Sagged with energy to spare?! What's up with that?!!
Good question! I have that same question! His excuse: "time's up" and then he went on with this: "it could be detrimental to your body to be on your feet this long" (oh please, I did 52 hours of labor - all standing!) His next line: "I could get in trouble as a coach if I allow you to go on" "its Team in Training national standards of coaching". Whatever-not buying it! I think the worst part is that my coaches have spent a significant amount of time telling us that we are getting down to the mental game and then the jerk sags me! Why didn't he just come right out and say "you can't do it" or "I just wanted you to get a taste of what the sag wagon will feel like at your marathon" - jerk.
Never, in my life, did I ever imagine I would be begging to keep running! But also, never, in my life, did I ever imagine I would feel like a failure after 14.5 miles. I also never imagined that I would be so mad after a practice that not a single muscle in my body hurt - the only pain I had was to the psyche.
The rest of the season is going to be interesting...
Sunday, March 1, 2009
Did I pee on myself?!!!!
Post Run delirium = bright pink socks, plaid pajama bottoms, brown shirt and Grey sweatshirt, oh yea, no bangs. Quite the picture! All this loveliness with an elevated knee on the couch and a bag of ice. Running is kicking my butt! Wow! My goals were simple when I got home: 1) take a shower 2) Make it to the couch. These goals did not include fashionable attire - So success was had.
My goals for the marathon are pretty much the same and are also simple: 1) Don't have chest pain 2) Finish upright 3) Beat the sag wagon - (I'm beginning to get nervous about this one. I honestly can't figure out how I am STILL so slow.)
Today we ran 14 miles. How do I know this since I usually only pay attention to time? I got this fancy new watch, the Garmin 301, that tells me EVERYTHING! Way more than I want to know, including my heart rate. Having a watch that tells all can be problematic for the out of shape runner. Ignorance was bliss. Now, unfortunately, I am aware of how close to a heart attack I actually am! Yikes! I had been doing the 3:1 interval but today had to take that down to a 2:1 now that I know what my heart rate really is (don't ask)! Turns out this fancy Garmin is also rude. The alarms are always going off: Heart rate too high, slow down! (translated: slow down chubbs) immediately followed by: Pace too slow, speed up! (translated: speed up slacker!) So far the alarms are the most used feature. Rude, just plain rude!
At about mile 8 I get a phone call from my mentor from last season's Nike race, Courtney. She is also on the Orting Trail running with the Seattle Rock and Roll Team and they are done with their practice and are back at the parking lot. I thought she was calling to offer me a ride (which I would have taken!) but instead she is calling to tell me they are about to tow my car! WHAT?!But don't worry. Her team picked it up and moved it and I can read about it on Facebook! I love that girl and that team - they saved my bug and the pictures are great!! Go to facebook to see some TNT teamwork in action!!
When I finally get back to the parking lot my legs feel like lead and bricks and cement. My knee hurts, my bursitis hurts, my hair hurts! My whole body is numb. I have my fake smile on and I am beginning to wonder if I will make it to my car. As I'm limping to the Beetle, with my fake smile on, I began to have the oddest sensation on my leg...it's starting to get my attention! I started to panic just little thinking this is way worse than I thought...I think I just became incontinent - did I just pee on myself? Oh my gosh! OK, don't panic, there is no way my bladder fell out! Did it? If I can't run 14 miles withouut losing my bladder how am I going to run a marathon? Am I imagining this? More moisture on my leg...I stop in my tracks. I'm starting to panic just a little more thinking, how am I going to tell all those generous people who gave me money to run that I can't run AGAIN because another organ fell out. Then...ohhh.... I breathe the biggest sigh of relief...I put my water bottle back upside down and it's leaking down my leg! Oh, thank God!
Now, for an update on Lew's transplant (which is a thousand times harder than a wimpy 14 miles!) sent from Lew's letter:
"We recently received the results of the latest bone marrow biopsy. It's been 28 days since the transplant using my brother Bill's stem cells. The news is good. His cells are engrafting. Measured in a couple of different places his cells make up either 67% or 56% of the cells located there. The transplant team would have been happy with any number over 50%. The take home message is that Bill's cells are moving in! Right now I'm a mixed chimerism individual with my own marrow cells still working and Bill's new cells moving in next door and setting up shop. Additionally, the count of myeloma cells (bad buggers) in my body is markedly decreased on this biopsy, though the variance could be mostly where the sample originated as the distribution of myeloma cells in bone marrow is not homogenous.
I've gotten through the first month with very little symptoms and side effects, mostly an upset (and at times rebellious) gastro intestinal tract. I had some cardiac arrythmia, but a change in drugs seems to have eliminated that pesky problem. We are required to stay close in the Seattle area for 100 days post transplant. As Bill's cells engraft and set about creating an immune system, the danger to me is that his cells might see me, or parts of me, as foreign and mount a response to attack my cells. This is called graft versus host disease (GVHD) and it can prove fatal. The biggest danger of GVHD is in the first few months (hence the 100 days post transplant), and the most common organs attacked are the skin, liver and kidneys. I am taking drugs to protect against most of the common problems associated with this type of transplant. Believe me it's a lot of pills everyday!
The other potential problem area is infection in general. I remain very immunocompromised and susceptable to infections and viruses. We do all we can to avoid those who might be sick, and just in general large crowds of people.
Rose and I continue to appreciate all your kind thoughts, prayers, and good wishes. I'd like you all to know that you are helping me in ways you can't even realize. As I pass the one year anniversary of dealing with this cancer, I feel uniquely blessed to have you as my friends and family."
Lew
Love ya Lew! GO TEAM!
My goals for the marathon are pretty much the same and are also simple: 1) Don't have chest pain 2) Finish upright 3) Beat the sag wagon - (I'm beginning to get nervous about this one. I honestly can't figure out how I am STILL so slow.)
Today we ran 14 miles. How do I know this since I usually only pay attention to time? I got this fancy new watch, the Garmin 301, that tells me EVERYTHING! Way more than I want to know, including my heart rate. Having a watch that tells all can be problematic for the out of shape runner. Ignorance was bliss. Now, unfortunately, I am aware of how close to a heart attack I actually am! Yikes! I had been doing the 3:1 interval but today had to take that down to a 2:1 now that I know what my heart rate really is (don't ask)! Turns out this fancy Garmin is also rude. The alarms are always going off: Heart rate too high, slow down! (translated: slow down chubbs) immediately followed by: Pace too slow, speed up! (translated: speed up slacker!) So far the alarms are the most used feature. Rude, just plain rude!
At about mile 8 I get a phone call from my mentor from last season's Nike race, Courtney. She is also on the Orting Trail running with the Seattle Rock and Roll Team and they are done with their practice and are back at the parking lot. I thought she was calling to offer me a ride (which I would have taken!) but instead she is calling to tell me they are about to tow my car! WHAT?!But don't worry. Her team picked it up and moved it and I can read about it on Facebook! I love that girl and that team - they saved my bug and the pictures are great!! Go to facebook to see some TNT teamwork in action!!
When I finally get back to the parking lot my legs feel like lead and bricks and cement. My knee hurts, my bursitis hurts, my hair hurts! My whole body is numb. I have my fake smile on and I am beginning to wonder if I will make it to my car. As I'm limping to the Beetle, with my fake smile on, I began to have the oddest sensation on my leg...it's starting to get my attention! I started to panic just little thinking this is way worse than I thought...I think I just became incontinent - did I just pee on myself? Oh my gosh! OK, don't panic, there is no way my bladder fell out! Did it? If I can't run 14 miles withouut losing my bladder how am I going to run a marathon? Am I imagining this? More moisture on my leg...I stop in my tracks. I'm starting to panic just a little more thinking, how am I going to tell all those generous people who gave me money to run that I can't run AGAIN because another organ fell out. Then...ohhh.... I breathe the biggest sigh of relief...I put my water bottle back upside down and it's leaking down my leg! Oh, thank God!
Now, for an update on Lew's transplant (which is a thousand times harder than a wimpy 14 miles!) sent from Lew's letter:
"We recently received the results of the latest bone marrow biopsy. It's been 28 days since the transplant using my brother Bill's stem cells. The news is good. His cells are engrafting. Measured in a couple of different places his cells make up either 67% or 56% of the cells located there. The transplant team would have been happy with any number over 50%. The take home message is that Bill's cells are moving in! Right now I'm a mixed chimerism individual with my own marrow cells still working and Bill's new cells moving in next door and setting up shop. Additionally, the count of myeloma cells (bad buggers) in my body is markedly decreased on this biopsy, though the variance could be mostly where the sample originated as the distribution of myeloma cells in bone marrow is not homogenous.
I've gotten through the first month with very little symptoms and side effects, mostly an upset (and at times rebellious) gastro intestinal tract. I had some cardiac arrythmia, but a change in drugs seems to have eliminated that pesky problem. We are required to stay close in the Seattle area for 100 days post transplant. As Bill's cells engraft and set about creating an immune system, the danger to me is that his cells might see me, or parts of me, as foreign and mount a response to attack my cells. This is called graft versus host disease (GVHD) and it can prove fatal. The biggest danger of GVHD is in the first few months (hence the 100 days post transplant), and the most common organs attacked are the skin, liver and kidneys. I am taking drugs to protect against most of the common problems associated with this type of transplant. Believe me it's a lot of pills everyday!
The other potential problem area is infection in general. I remain very immunocompromised and susceptable to infections and viruses. We do all we can to avoid those who might be sick, and just in general large crowds of people.
Rose and I continue to appreciate all your kind thoughts, prayers, and good wishes. I'd like you all to know that you are helping me in ways you can't even realize. As I pass the one year anniversary of dealing with this cancer, I feel uniquely blessed to have you as my friends and family."
Lew
Love ya Lew! GO TEAM!
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