When Team Guinness began we were three individuals who ran races together. In the 20-mile 'sprint' version of the adventure races, the pace was very fast and the competition was only separated by a few minutes over a 2-4 hour race. These events typically consisted of a trail running section, a mountain bike section, and a lake kayaking section. Additionally the races would organize obstacles or challenges along the way that forced the teams to deal with a situation that they probably had never encountered before. You may have to tie a special type of knot, get your team over a 12' military wall, change a bike tire, etc. Anything they could throw at you to keep you off balance. It's what made the sport so entertaining for us.
My team members each had their own strengths. Steve is a giant man of 6'4"-6'5" with amazing strength. He was not your prototypical endurance athlete but became very dedicated to training to improve his skills and began to excel at mountain biking. Dave was our running motor, he had become an elite triathlete in his own right and could out run Steve and I together. I was the problem solver, when we'd come to the various challenges I would typically take lead and often get us through the situation faster than the other teams. But we were all proud males and we wanted hold up our own end of the bargain for one another. No one wanted to admit that they might be weak. This mentality cost us in the beginning.
It was our first race as a sponsored team and we went in with sky high expectations. The race was located at Lake Castaic in Southern California (very beautiful spot) and our sponsor, who was located out of Connecticut, flew out to witness the event, take pictures, and begin making hay on the sponsorship money she took a chance on giving to us. The race turned into a huge disaster. The first major issue I remember was a flat tire that happened about half way into the mountain bike section. We were up near the lead of the race when the blowout occurred. We had the materials to change out the tire, but our teamwork was horrible. Further into the course we struggled with several of the challenges and fell further behind. The other thing that became evident during the race was our different capabilities at each discipline. Mountain bikes would move at different speeds and we all had a different per mile running pace. We wound up at the lowest common denominator. We crawled across the finish line embarrassed with no podium to our credit.
What we did learn during the event was to observe some of the successful teams. We started noticing small tricks they used that were allowed in these types of races. Namely, you were allowed to help your teammates. One of the most useful tricks was using tow ropes. By taking a long piece of shock cord you can tie the front end around one person, then clip it around someone running behind them to create a tandem tow. The same idea works on mountain bikes once you build up the skill and for the kayaks as it kept them in line and increased our draft. Now, instead of Dave jogging beside Steve and I, he could transfer energy and the group could move faster. The key however, is that the person in the back needs to acknowledge and accept the help.
As adults, we build our lives as independent people and take pride in self reliance. While we have networks of friends and colleagues that we're interdependent on, I think it's rare for people to accept help. Since I've started this cancer journey just a short time ago, I expected the support and love from my family. But now an extended network of friends and friends of friends that I don't even know are coming forward to offer help. Joanne and I continue to talk about the amazing and totally unexpected outreach that grows around us at this time. There are times when we start to feel like it's all too much, almost embarrassed. But then we realize that others have the energy and desire to share that energy with me and my family. So we will acknowledge and accept the help and will gladly strap on the tow line.
Thursday, February 6, 2014
Wednesday, February 5, 2014
Busting Out
Tuesday, 2/4
I had a busy morning taking on additional platelets and blood to get those counts back in line. The blast cells didn't register yesterday as the total volume of white blood cells is now so low. That was the first report without blast cells, so a positive thing. It doesn't mean they're still not in there, just that they can't read them right now. We are headed towards a stage called Nadir, or low point where the chemo will finish suppressing the body's ability to make new blood cells and a natural rebuild will begin. They expect this to happen around day 10-12 from when treatment started or by this Thursday or Friday. From there we'll be monitoring the rise in blood counts and hope that they come back free of blast cells. Being free of blast cells will allow us to continue on to the consolidation phases. Return of blast cells means we must repeat induction.
The Oncologist then brought some excellent news that the pathology report revealed a M2/M4 (likely) AML with normal cytogenetics. The take away here is that we're dealing with a more curable form of AML and that bone marrow transplant is likely not necessary. The present course of treatment should theoretically be enough. That was a huge weight off mine (and my wife's) shoulders. Not knowing if this was some sort of strange mutation that scientists around the world would want to study, experimental drug trials, grasping at straws. It's much more comforting that we're dealing with a known enemy and there's a plan to defeat it.
With spirits riding high I asked the Dr. if I could get a hall pass to visit the outside garden and he approved! They unhooked me from the IV in the afternoon and my mom and I went off the floor, down the elevator, and outside.
The first place we tried was a little garden area near a cafeteria. As we walked outside, there sat three people smoking, right next to the NO SMOKING ON THIS PROPERTY sign. You can't make this stuff up. We snapped a photo and headed in another direction. Walking the other way took us down to a lake side cafe and something I haven't seen in a week and a half - stairs. Wow, the atrophy that is taking place is unreal. We went down the stairs and sat out by the lake next to the hospital for just a few minutes, then made our way back to my room. I was pretty tired from the activity, but loved that I broke through a new barrier. I plan to return soon.
I had a busy morning taking on additional platelets and blood to get those counts back in line. The blast cells didn't register yesterday as the total volume of white blood cells is now so low. That was the first report without blast cells, so a positive thing. It doesn't mean they're still not in there, just that they can't read them right now. We are headed towards a stage called Nadir, or low point where the chemo will finish suppressing the body's ability to make new blood cells and a natural rebuild will begin. They expect this to happen around day 10-12 from when treatment started or by this Thursday or Friday. From there we'll be monitoring the rise in blood counts and hope that they come back free of blast cells. Being free of blast cells will allow us to continue on to the consolidation phases. Return of blast cells means we must repeat induction.
The Oncologist then brought some excellent news that the pathology report revealed a M2/M4 (likely) AML with normal cytogenetics. The take away here is that we're dealing with a more curable form of AML and that bone marrow transplant is likely not necessary. The present course of treatment should theoretically be enough. That was a huge weight off mine (and my wife's) shoulders. Not knowing if this was some sort of strange mutation that scientists around the world would want to study, experimental drug trials, grasping at straws. It's much more comforting that we're dealing with a known enemy and there's a plan to defeat it.
With spirits riding high I asked the Dr. if I could get a hall pass to visit the outside garden and he approved! They unhooked me from the IV in the afternoon and my mom and I went off the floor, down the elevator, and outside.
The first place we tried was a little garden area near a cafeteria. As we walked outside, there sat three people smoking, right next to the NO SMOKING ON THIS PROPERTY sign. You can't make this stuff up. We snapped a photo and headed in another direction. Walking the other way took us down to a lake side cafe and something I haven't seen in a week and a half - stairs. Wow, the atrophy that is taking place is unreal. We went down the stairs and sat out by the lake next to the hospital for just a few minutes, then made our way back to my room. I was pretty tired from the activity, but loved that I broke through a new barrier. I plan to return soon.
Tuesday, February 4, 2014
A milestone, and lessons of the past
Round one of Chemo is done! It took a little longer than expected, but by 9:00am the last drops of medicine (or is it poison?) dripped into my veins. Drops in hemoglobin and platelets required me to take on additional transfusions. (Sign up to give blood - today!). I was able to unhook from the stand and get in a shower, which I missed yesterday. I told the nurse I would be fast and she said, "no need, you're off chemo now." Ah, nice. I was able to take a long shower, get dressed, and go for a solo walk. Again, it's hard to describe the simple liberation that comes along with just walking down the hall on your own when you normally have to wear an anchor. The nurses also changed out the dressing that covers the PICC line which felt good. Early on I had to have a powder seal poured over the insertion site to help stop the bleeding. They were able to clean all that up finally and apply new bandages. A fresh start, it feels good. Now it's time to recover and wait for test results to come back over the next week.
I had a productive day of work and a few more friends reached out that are now hearing the news second hand so I'm still backing up to retell the story. It's great to reconnect with all of them even if under these circumstances. (Call an old friend this week). My sister brought me some lunch and my mom some dinner - family friend Carlie's Turkey Chili - it was excellent.
My visit with Dave on Sunday and a reconnect with another close friend of mine, Steve, has been bringing back memories of our time together adventure racing. There are so many great stories that came out of these times and for me, life-changing experiences that really transformed me as a person and my life's direction. I realize how much I still draw on these lessons and now important many of them are in the here and now. I think there's a treasure's trove of tidbits here, so let's explore and see where the adventure takes us.
Adventure Racing first caught my eye in the early 2000s when a young Brit successfully televised one of the first expedition-style adventure races on TV. Four-person teams raced up to 300 miles cross country by human-powered means (running, biking, paddling) through the wilderness to different check points and eventually to the finish line. They navigated the course with maps and compass, raced around the clock, and traversed some awesome terrain. The event would grow over the next few years into the Eco-Challenge and it made Mark Burnett a revolutionary TV Producer.
I was in my early 30s, living in Connecticut, working at a software start up and just starting our family. Life was progressing in storybook fashion. We had a great house, I was making good money, we had kids and a chocolate Lab pup. But at the same time, there was always a restlessness inside of me. I had been an athlete all my life, starting with little league through my swimming career that took me all the way through college. But since leaving college, there was no athletic pursuit in my life other than a few rounds of golf and some recreational volleyball Joanne and I played while we lived in California. The Eco-Challenge re-lit a fire inside of me and I started to get back into some training to try a triathlon. It was at that triathlon where I ran back into Dave. We were swimming teammates (along with his lovely wife Denise) at Northeastern University in Boston and it turned out that they lived 30 minutes down the road from us in CT. We began talking about adventure racing as there was now a new series of short 20-mile races popping up across the country and I had tried one with some friends that previous fall. It was hard and our team was very unprepared, but I was hooked. I convinced Dave and eventually Steve who worked with me at the software company to join me for a race. We went to Orchard Beach, NY and placed second in the all-male division in our first event together. I was hooked.
Over the winter we sent out proposals for sponsorship to many companies and with a stroke of good luck, the Diageo company came forward with a great offer and Team Guinness was born. We were funded to travel around the country to participate in eight 20-mile races plus a 24-hour race that would take place near Mt. Hood Oregon. All these events were now televised on the Outdoor Life Network, and the buzz around adventure racing growing each spring when the new Eco-Challenge aired.
While I had survived a few short races, I knew the effort and knowledge required to get into expedition-style racing was beyond me. I found a company offering a week-long adventure racing camp in West Virginia that next April and signed up to attend. It was amazing. We spent the entire week near the New River Gorge in West Virginia training on map & compass navigation, both in day time and at night. Mountain biking, white water kayaking and canoe, rope climbing and rappelling. They covered it all. Then at the end of the week, the students, formed teams and tried to complete a 100-mile race course.
Wow, to sit down the night that the race started (Friday night at midnight) with the presentation of almost 30 topographical maps and a booklet of instructions for locating the checkpoints at 7:00pm and have only five hours to prepare to march into the wilderness; it was totally overwhelming. The only way to attack a problem like that is a step at a time. You can't race 100 miles to the finish line all at once; you take it in appropriate stages. The only logical step was to read the coordinates for the first check point, plot it on the map as we were taught, plan our optimal route to get from the
start to the first check point, then continue on from there.
So there it is, our first nugget. Now that I sit here in a battle against cancer, I think that part of the struggle is wanting to get to the finish line right away. I want to be cured. But there are steps along the way and even the best laid plans will go awry at some point (plenty of those stories to share soon). The only logical approach is to break it down into smaller, achievable steps that march you toward your goal and focus on those discrete steps that can take you there. Of course you need to have a clear goal in mind in the first place. Sometimes that's easy, sometimes we struggle to know what we want. In my case my current goal has been chosen for me. But once you have something locked in your sites, make a plan, and just get to the first check point.
I had a productive day of work and a few more friends reached out that are now hearing the news second hand so I'm still backing up to retell the story. It's great to reconnect with all of them even if under these circumstances. (Call an old friend this week). My sister brought me some lunch and my mom some dinner - family friend Carlie's Turkey Chili - it was excellent.
My visit with Dave on Sunday and a reconnect with another close friend of mine, Steve, has been bringing back memories of our time together adventure racing. There are so many great stories that came out of these times and for me, life-changing experiences that really transformed me as a person and my life's direction. I realize how much I still draw on these lessons and now important many of them are in the here and now. I think there's a treasure's trove of tidbits here, so let's explore and see where the adventure takes us.
Adventure Racing first caught my eye in the early 2000s when a young Brit successfully televised one of the first expedition-style adventure races on TV. Four-person teams raced up to 300 miles cross country by human-powered means (running, biking, paddling) through the wilderness to different check points and eventually to the finish line. They navigated the course with maps and compass, raced around the clock, and traversed some awesome terrain. The event would grow over the next few years into the Eco-Challenge and it made Mark Burnett a revolutionary TV Producer.
I was in my early 30s, living in Connecticut, working at a software start up and just starting our family. Life was progressing in storybook fashion. We had a great house, I was making good money, we had kids and a chocolate Lab pup. But at the same time, there was always a restlessness inside of me. I had been an athlete all my life, starting with little league through my swimming career that took me all the way through college. But since leaving college, there was no athletic pursuit in my life other than a few rounds of golf and some recreational volleyball Joanne and I played while we lived in California. The Eco-Challenge re-lit a fire inside of me and I started to get back into some training to try a triathlon. It was at that triathlon where I ran back into Dave. We were swimming teammates (along with his lovely wife Denise) at Northeastern University in Boston and it turned out that they lived 30 minutes down the road from us in CT. We began talking about adventure racing as there was now a new series of short 20-mile races popping up across the country and I had tried one with some friends that previous fall. It was hard and our team was very unprepared, but I was hooked. I convinced Dave and eventually Steve who worked with me at the software company to join me for a race. We went to Orchard Beach, NY and placed second in the all-male division in our first event together. I was hooked.
Over the winter we sent out proposals for sponsorship to many companies and with a stroke of good luck, the Diageo company came forward with a great offer and Team Guinness was born. We were funded to travel around the country to participate in eight 20-mile races plus a 24-hour race that would take place near Mt. Hood Oregon. All these events were now televised on the Outdoor Life Network, and the buzz around adventure racing growing each spring when the new Eco-Challenge aired.
While I had survived a few short races, I knew the effort and knowledge required to get into expedition-style racing was beyond me. I found a company offering a week-long adventure racing camp in West Virginia that next April and signed up to attend. It was amazing. We spent the entire week near the New River Gorge in West Virginia training on map & compass navigation, both in day time and at night. Mountain biking, white water kayaking and canoe, rope climbing and rappelling. They covered it all. Then at the end of the week, the students, formed teams and tried to complete a 100-mile race course.
Wow, to sit down the night that the race started (Friday night at midnight) with the presentation of almost 30 topographical maps and a booklet of instructions for locating the checkpoints at 7:00pm and have only five hours to prepare to march into the wilderness; it was totally overwhelming. The only way to attack a problem like that is a step at a time. You can't race 100 miles to the finish line all at once; you take it in appropriate stages. The only logical step was to read the coordinates for the first check point, plot it on the map as we were taught, plan our optimal route to get from the
start to the first check point, then continue on from there.
So there it is, our first nugget. Now that I sit here in a battle against cancer, I think that part of the struggle is wanting to get to the finish line right away. I want to be cured. But there are steps along the way and even the best laid plans will go awry at some point (plenty of those stories to share soon). The only logical approach is to break it down into smaller, achievable steps that march you toward your goal and focus on those discrete steps that can take you there. Of course you need to have a clear goal in mind in the first place. Sometimes that's easy, sometimes we struggle to know what we want. In my case my current goal has been chosen for me. But once you have something locked in your sites, make a plan, and just get to the first check point.
Monday, February 3, 2014
More surprises
Early morning I was checking my email and received a note from one of our Tennis friends from Vero Beach. He informed me that a group at our club was going to organize a fund-raiser on our behalf next week. He showed me the announcement for the event and explained how everyone was going to pitch in to have an afternoon of tennis, food, and raffles. Joanne and I were totally blown away. The amazing outpouring of love and offers to help have been so reassuring for us but we haven't been able to really take advantage of the offers directly. Now that we're settling into this new mode of life, we did start to brain storm a few items to take a small load off Joanne at home. Things like a pre-made meals, home cleaning service and lawn service are great luxuries to ease time pressure at home. Such an amazing gesture. Thank you in advance to everyone who is involved.
Super Bowl Sunday
Sunday, February 2nd
Superbowl Sunday - at least there was going to be something to watch on TV tonight. Joanne came over and spent the morning with me. It gives us a chance to catch up on all the little things in our lives and plan the week ahead. She was here when the Oncology PA visited and was able to ask more questions. Most of them remained unanswered for now as we wait on the pathology report and then for the follow up biopsy that will take place on day 14 to see how well the chemo worked. From there the plan will be modified depending on the results. So nothing to do for now except finish out the final day of chemo and begin the recovery phase which some say might be harder than the first week due to zero white blood cells. Count is now down to 0.27.
The kids came back in after lunch and spent a few more hours here. Some very generous friends of our bought me an XBox 360 for the room. The controller reads your body and your full body movements change the game play. It's a way for me to remain active and the kids love it of course. And those of you with siblings or multiple kids know, it brings out all the competitive spirit and haggling over who's turn it is to make me feel like I'm right at home.
I took a few walks during the day but have to admit that they didn't feel as strong. My low blood count also decreases my ability to supply oxygen to my body so I have to move a little slower. My daughter Brenna joined me for a one on one walk and we caught up on her life some. It was a great conversation, she's growing up quickly.
I noticed in the late afternoon that my chemo bag was still rather full. The final day of treatment should have been complete by 5:00pm. Apparently the pump shut off during the day at some point but did not fire off any alarm, nor did the nurses catch it during their rounds. No major foul I guess, but now it will take until the morning to finish out.
For the evening, my mom returned and I had another close friend of mine from Connecticut stop by. He too was in town for an industry conference in Orlando. He brought in pizza and dessert for the Superbowl and hung out to watch the game with me. Another great day, unless you had money on Denver - yikes.
Superbowl Sunday - at least there was going to be something to watch on TV tonight. Joanne came over and spent the morning with me. It gives us a chance to catch up on all the little things in our lives and plan the week ahead. She was here when the Oncology PA visited and was able to ask more questions. Most of them remained unanswered for now as we wait on the pathology report and then for the follow up biopsy that will take place on day 14 to see how well the chemo worked. From there the plan will be modified depending on the results. So nothing to do for now except finish out the final day of chemo and begin the recovery phase which some say might be harder than the first week due to zero white blood cells. Count is now down to 0.27.
The kids came back in after lunch and spent a few more hours here. Some very generous friends of our bought me an XBox 360 for the room. The controller reads your body and your full body movements change the game play. It's a way for me to remain active and the kids love it of course. And those of you with siblings or multiple kids know, it brings out all the competitive spirit and haggling over who's turn it is to make me feel like I'm right at home.
I took a few walks during the day but have to admit that they didn't feel as strong. My low blood count also decreases my ability to supply oxygen to my body so I have to move a little slower. My daughter Brenna joined me for a one on one walk and we caught up on her life some. It was a great conversation, she's growing up quickly.
I noticed in the late afternoon that my chemo bag was still rather full. The final day of treatment should have been complete by 5:00pm. Apparently the pump shut off during the day at some point but did not fire off any alarm, nor did the nurses catch it during their rounds. No major foul I guess, but now it will take until the morning to finish out.
For the evening, my mom returned and I had another close friend of mine from Connecticut stop by. He too was in town for an industry conference in Orlando. He brought in pizza and dessert for the Superbowl and hung out to watch the game with me. Another great day, unless you had money on Denver - yikes.
Sunday, February 2, 2014
Little surprises
Saturday, Feb. 1st
One of my friends wrote me a note about a long hospital stay and told me that someone unexpected would reach out at some point and offer inspiration. I wasn't even sure what that might mean for me as I don't feel that I need a rescue, at least at the moment. But I filed the note away and made sure to be on the look out. Well, what do you know...
The nurses on staff here change out shifts every 12 hours and there are enough of them that I had not seen the same nurse twice my entire stay. They definitely have a challenging job typically overseeing 4-5 rooms each, keeping up with vitals, medications, and patient needs. At their stations I see them working on their documentation, reviewing labs, and their own continuing education. Last night Cecilia was assigned to me. She's been in nursing and Oncology for many years and her knowledge and skill show immediately. After she finished the nursing task list that kicks off each shift, she lingered a little and struck up a conversation with me. It was the first time a staff member had gone beyond the medical care phase. She had entered the room earlier when Joanne and the kids were here so she met them all briefly. She began to ask me about my family and wanted to know about each child and their gifts. She has several of her own children and shared them with me. She then pointed out how some people get hung up on small short-term goals when dealing with cancer. They just want to make it to a single date like a graduation or wedding rather than say I'm going to beat this thing and live my entire life just the way I wanted. She emphasized family and how with children life starts to become more about them and less self centered around the parent. She sat for 20-25 minutes and it was really a beautiful conversation. It welled up some emotion for me thinking hard about my family and the release was good. Obviously there's still some psychology to deal with beyond the physical struggle. Afterwards it reminded me of the movie Patch Adams - if you treat the disease you win some, you lose some; but treat the patient and you win every time.
Saturday morning started out a little strange. I had to receive another hit of platelets, so I was taking them on while eating my breakfast. Joanne and the kids were coming in the morning, so I was very upbeat for the day. While I was eating I could feel my eyes getting puffy. I looked in the mirror and I looked like Rocky in round 10. Yikes. I read that platelet transfusions can cause allergic reactions in some cases. The nurse hit me with some more Benedryl through IV which knocked me out for a nap. The swelling persisted for most of the day so I just looked silly. My other brother-in-law (also named Brian) thought it sounded like a new super power. That made me laugh to think about how that could prove useful out there- Pufferfish Man! No long term damage here, and they said they switch me to a single donor mode for future platelets.
Joanne, Tyler, and Brenna came by this morning. Emily decided not to come. She was having fun with her cousin but she also admitted to Joanne it was hard for her to see me in the hospital. And, hanging in a hospital room isn't that exciting for a 10-year old.
In the afternoon, my college roommate Billy stopped by which was amazing. He just happened to be in town for a work conference in Orlando and was able to steal a few hours for me. We don't get to see one another too much and we definitely went through the full college experience together, it was great to catch up.
Joanne came back over by herself for the evening and we had a little date night with a great meal and just hanging out talking and cuddling. It was fantastic.
One of my friends wrote me a note about a long hospital stay and told me that someone unexpected would reach out at some point and offer inspiration. I wasn't even sure what that might mean for me as I don't feel that I need a rescue, at least at the moment. But I filed the note away and made sure to be on the look out. Well, what do you know...
The nurses on staff here change out shifts every 12 hours and there are enough of them that I had not seen the same nurse twice my entire stay. They definitely have a challenging job typically overseeing 4-5 rooms each, keeping up with vitals, medications, and patient needs. At their stations I see them working on their documentation, reviewing labs, and their own continuing education. Last night Cecilia was assigned to me. She's been in nursing and Oncology for many years and her knowledge and skill show immediately. After she finished the nursing task list that kicks off each shift, she lingered a little and struck up a conversation with me. It was the first time a staff member had gone beyond the medical care phase. She had entered the room earlier when Joanne and the kids were here so she met them all briefly. She began to ask me about my family and wanted to know about each child and their gifts. She has several of her own children and shared them with me. She then pointed out how some people get hung up on small short-term goals when dealing with cancer. They just want to make it to a single date like a graduation or wedding rather than say I'm going to beat this thing and live my entire life just the way I wanted. She emphasized family and how with children life starts to become more about them and less self centered around the parent. She sat for 20-25 minutes and it was really a beautiful conversation. It welled up some emotion for me thinking hard about my family and the release was good. Obviously there's still some psychology to deal with beyond the physical struggle. Afterwards it reminded me of the movie Patch Adams - if you treat the disease you win some, you lose some; but treat the patient and you win every time.
Saturday morning started out a little strange. I had to receive another hit of platelets, so I was taking them on while eating my breakfast. Joanne and the kids were coming in the morning, so I was very upbeat for the day. While I was eating I could feel my eyes getting puffy. I looked in the mirror and I looked like Rocky in round 10. Yikes. I read that platelet transfusions can cause allergic reactions in some cases. The nurse hit me with some more Benedryl through IV which knocked me out for a nap. The swelling persisted for most of the day so I just looked silly. My other brother-in-law (also named Brian) thought it sounded like a new super power. That made me laugh to think about how that could prove useful out there- Pufferfish Man! No long term damage here, and they said they switch me to a single donor mode for future platelets.
Joanne, Tyler, and Brenna came by this morning. Emily decided not to come. She was having fun with her cousin but she also admitted to Joanne it was hard for her to see me in the hospital. And, hanging in a hospital room isn't that exciting for a 10-year old.
In the afternoon, my college roommate Billy stopped by which was amazing. He just happened to be in town for a work conference in Orlando and was able to steal a few hours for me. We don't get to see one another too much and we definitely went through the full college experience together, it was great to catch up.
Joanne came back over by herself for the evening and we had a little date night with a great meal and just hanging out talking and cuddling. It was fantastic.
Saturday, February 1, 2014
A very good day
Friday, January 31st
A very good day. I slept better through the night and the early morning medical news was good - WBC down to 0.8, blast cells down to 46%. I had to return for an ultrasound in the morning to check liver, kidney, and pancreas function and all systems are go.
Another dreary day in Orlando which helps me right now as I don't miss the outdoors as much and I can stay focused on work. I had a productive day and was motivated by the knowledge that my family would all be headed in to see me that evening. I walked about a mile and a half before lunch on my own. My sister busted me in some Five Guys for lunch, I'm starting to worry about putting on weight.:)
The only regression today was the idea that depending on the pathology report and the follow up bone marrow biopsy that will take place around day 14, is that it might be necessary to add a second Induction Phase. If the blast cells are not 100% cleared, they would rather go through Induction again and get them all up front rather than allow them to drift back upwards again. The approach is logical and would perhaps extend my first stay here by two weeks. I'm actually not too upset about that scenario. Better to get the job done right.
My mom visited again in the afternoon and we worked in another walk. I can feel the fatigue setting in more in the afternoon. The lower blood count is also making it harder to walk quickly, I may need to come off my Olympic Pace of 16-minute miles. My sister - the one helping me with the blog - was inspired to go donate platelets out in LA.
Joanne and the kids arrived which was so uplifting. They all thought I looked a lot healthier. My cold sores on my lips have cleared, I was able to shave (yes, I remembered the shower today!), and my overall complexion has improved. The family also came bearing gifts from friends in Vero and that created an uplifting moment. The night was short, but I was really happy climbing into bed and looking forward to some sleep knowing that I'd get to see them all weekend.
A very good day. I slept better through the night and the early morning medical news was good - WBC down to 0.8, blast cells down to 46%. I had to return for an ultrasound in the morning to check liver, kidney, and pancreas function and all systems are go.
Another dreary day in Orlando which helps me right now as I don't miss the outdoors as much and I can stay focused on work. I had a productive day and was motivated by the knowledge that my family would all be headed in to see me that evening. I walked about a mile and a half before lunch on my own. My sister busted me in some Five Guys for lunch, I'm starting to worry about putting on weight.:)
The only regression today was the idea that depending on the pathology report and the follow up bone marrow biopsy that will take place around day 14, is that it might be necessary to add a second Induction Phase. If the blast cells are not 100% cleared, they would rather go through Induction again and get them all up front rather than allow them to drift back upwards again. The approach is logical and would perhaps extend my first stay here by two weeks. I'm actually not too upset about that scenario. Better to get the job done right.
My mom visited again in the afternoon and we worked in another walk. I can feel the fatigue setting in more in the afternoon. The lower blood count is also making it harder to walk quickly, I may need to come off my Olympic Pace of 16-minute miles. My sister - the one helping me with the blog - was inspired to go donate platelets out in LA.
Joanne and the kids arrived which was so uplifting. They all thought I looked a lot healthier. My cold sores on my lips have cleared, I was able to shave (yes, I remembered the shower today!), and my overall complexion has improved. The family also came bearing gifts from friends in Vero and that created an uplifting moment. The night was short, but I was really happy climbing into bed and looking forward to some sleep knowing that I'd get to see them all weekend.
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