Today is the 5-year anniversary of Amy's stem cell transplant. 5-years ago this was considered her "re-birthday"and was really the final step in her treatment for acute myeloid leukemia.

If you followed then, you know that the treatment ended. The recovery did not nor did life after cancer. That is the definition of survivor, life after diagnosis. I tended to think that it was life after treatment, but early on we noted that being a survivor started the day of diagnosis.

Cancer will be part of the story, but not THE story.

I've been meaning to write some stuff since the last entry probably 3 years ago.

I wanted to write some stuff about what we were doing for work, exercise, and life in general.

Chop wood, carry water.

Focus on the the basics and be consistent.

We have a dog now, she's awesome. Thanks Rita and Adam.

Avoid negative energy. I need to work on that.

It's ironic to be celebrating right now with all that's going on.

Leave things better for those that follow.

I wanted to write more.

Memories can be short. Thanks to everyone for the help then and now.

Amy and I met at the pool. She was coaching at Great Hills Country Club for Capital of Texas Aquatics. I was working at URS as an Engineer focused on air permitting for industrial clients and mercury removal for coal fired power plants. Sometime after that, we both left those jobs to race as professional triathletes and coach in person and online.

Monday, we will go back to those roles. Or rather, I'll go to an office for the first time in awhile, and Amy will continue coaching on deck.

Amy, with a little help from me, has been coaching at the Pflugerville satellite program of Longhorn Aquatics. She coaches the Bronze and Silver groups. She says that there are days where she is a great coach and others where she feels like there's work to do. But, she's good at it, very good. I've seen it.

I've continued to coach athletes remotely online and on-deck, and I'm good at it. I'll continue though with a smaller group. I'll sum up the season over on the triathlon blog. Monday November 14th some of that will change. I'll put on business casual clothes and head to an office at the Texas Commission on Environmental Quality.

It's a move that I planned 2 years ago. It was a move that would have taken off a lot of stress with sponsors and income, etc. for Amy's last season of racing. That was B.C. (Before Cancer). I planned the same move that I planned on a year ago, but we were still to-ing and fro-ing to Houston and dealing with life AC. So this year it was time for a number of reasons.

Already more than a month has passed since the last update here. This one is filed under "Life Gave Us a Lemon", but it could very well be a triathlon update. The days when I am able to focus more and be productive, I don't want to update as it pulls me away from what matters. The days that I'm relatively unproductive, well you know why there isn't an update.

Ironman Texas came and went. We had 5 athletes racing and honestly it was a mixed bag. 1 athlete, Lee Walther, has punched his ticket to Kona. The others dealt with, like everyone else, a day that included: a re-routed swim, a changed transition area, a shortened and criterium style bike, Texas humidity, sun, rain, hail, lightening, and a stopped race that was re-started. We had 1 really bad race that included a bike crash. When you average out the good and bad it was just that...average. We have good days when our athletes have good days. We have bad days when they have bad days. We re-grouped and looked to see if things needed to be tweaked. Always learning and always looking to do 'better'. I've said that before.

After that we headed to MD Anderson, our literal second home in 2015. It was a bit early, but Amy had her 1 year check-up post treatment.

I was reminded not long ago, seems someone commonly does, that there had not been an update to the website about Amy's progress. It is a welcomed reminder since it is an indication that people are still following.

She's progressing well. They said the first year after transplant is expected to be up and down. That typically the second year trends more upwards. Amy has been doing well. Again, I tend to try to slow her down at times. She's active daily. She is back to coaching 2x a week sometimes 3x.

Things move forward there and continue to go well. We were in Houston last week for an appointment and will be back in a month and a half or so for her 1 year appointment.

And yes, this update is "just" another update. It was prompted more by the fact that I was asked to be a coach at the Team Red, White, and Blue tri camp that has found a home in Austin the last 5 years. The TriCamp is about the fundamentals of triathlon and learning about triathlon in general. But, it also had a leadership focus, at least it did this year. One of the purposes was to provide the selected campers the tools they needed to go back into their respective communities and be leaders in their chapter.

I started this one on Friday afternoon. But, Friday afternoon is the day that what might normally be 'big' news stories are published. By doing so that they are generally overlooked since the weekend is right around the corner. I think it is a thing, you could probably look it up, and if you read it on the internet then it must be true...right!? If it's not a thing then you heard it here first. Monday morning it is.

I was recently asked if "No news is good news?" and "How is Amy really doing?"

This week we head back to Houston for Amy's 9-month follow-up. More labs, a basic Dr. appointment, and another bone marrow biopsy. With that, if you recall, comes the pain of waiting for results. Not to mention the 15th hole punched in Amy's hip...or close to it.

No news is good news. Amy has been doing better than me about getting on a normal schedule. She swims 3-4 days a week, walk/jogs a few days a week, and lifts weights 2-3 days a week. She's not training per se, but is really enjoying getting back to a routine. I find myself trying to slow her down and keep her from constantly seeking to 'do more'.

Once again, I find that weeks have passed without an update of any kind. Fact is, we're slowly getting back out into the world. The big crazy scary world. Yes, fear is a motivator of sorts, however real or however misguided it might be.

As we, more precisely Amy, go back out into the real world, the first inclination of many is to 'rush' up to Amy with their arms open for a big hug. I've learned that many who come from the North-East are almost scared of hugs. You would think that months and months of the year spent in the cold and snow hoping for some warmth, they would welcome a hug, but it ain't so. Further, Amy is just not a 'hugger'.

Those of us from the South may give you a big hug. Or we might naturally and gracefully go from a handshake to a hug in one motion. Graceful unless the receiver is a non-hugger. Northerners, not so much.

For the time being though, no hugs. People are dirty. Not just kids, though they are particularly nasty. And we like kids. It's cold and flu season. You might brush it off as allergies, but in 48 hours it might be a full-blown virus. In Texas it is particularly bad. While the North says they have 4 or more months of winter, in Texas we have a max of 4 months when it isn't cold, flu, or allergy season...because during those 4 months it is almost too hot for anything to survive.

I'll start with the point of this post. "Thank You".

FaceBook wanted to give me my "2015 in Review". I know what my 2015 was like. I lived it. I tried to bring you all along with us. I don't know what 2016 will bring, but a part of me is really ready to get to 2016.

Things are going well. Amy has continued to recover from her treatment, now just over 6 months ago. She has been tapered off a few drugs, is slowly tapering a few more, and received 1 out of 4 rounds of re-vaccinations. They will run a few tests to see which, if any, other vaccinations are needed. Instead of appointments every 2 weeks, they are now spaced every 3 weeks with 6 weeks between Houston trips. We will continue to ask if everyone is 'healthy' when we meet people and generally avoid kids and crowds.

We have historically not been the greatest about Christmas or Holiday cards, I am the weak link in that chain. We keep a list of sorts and we have tried to send them out in the past. This year, the "list" would be exceedingly long. The "Thank You" cards to numerous to send. Let this serve as a very impersonal, but widely written, Thank You.

It is a global Thank You.

Thank you for the donations. Thank you for the meals. The help in Austin or Houston. The list is too long to write, and there are too many to mention. To write one name would require writing more, and someone would be left out.

September 16, 2015 was the last 'official' update here. I posted the link to a Slowtwitch interview that I did a couple of weeks ago. I'll elaborate on some of the questions and answers as we go.

"Priorities changed out of necessity. Amy's went from racing to surviving. Mine went from figuring out what is 'next' to what was right in front of me, which was being a caretaker for Amy, an advocate in the hospital, and also juggling many of the things that we might have previously shared."

We have been home a month and a half or so. Those 6 weeks have generally found us trying to stay at the house and do some fall cleaning. But, they have included 1 follow-up to MDACC, a solo trip to my parent's, a visit or two with Amy's family here in Central Texas, and both of us wen to my parent's last weekend...Amy's first change of scenery since we got home. I hear there was also a race last weekend in Hawaii.

A couple of weeks ago I went outside to clean up the shed a bit and to dig up a few old/small rotted stumps between our yard and the neighbors yard. That turned into me "getting distracted" by a hole that's been in the back yard for at least 10 years. That led to me making a bigger hole that was about 3ft x 1.5 ft x 2 ft deep. A sewer line was in the bottom. In the sewer line was another hole. A trip to Lowes, and 6 hours all total it was fixed. I went in and told Amy that "I got distracted." I've used that line a lot in the past 6 weeks.

No, those are not middle fingers. We went to the Salt Lick with the Cervelo crew when they came to Austin for a super secret visit a year and a half or so ago. Amy and I went to a Round Rock Game a couple of weeks ago. The Salt Lick is right there at Dell Diamond. We sent Cervelo the picture.

Slowtwitch did a follow-up update.

Up Close with Brandon Marsh

I had this blog in mind last week, and an article came across my feed to push it forward. The article is worth a read, and in it "normalcy" is referenced.

Yes, that is our oven temperature control knob. One of the 'Comforts of Home'.

When I googled 'The Comforts of Home' for an image one of the top results was a Flannery O'Conner book with the same title. I might need to add that to my fiction reading list. I read "A Good Man is Hard to Find" somewhere along the way in school, maybe sophomore or senior English. Oddly enough people would read that one, but several requested that they didn't read "Flowers for Algernon". I digress, and instead of using a google image...I figured the oven knob would make better sense. It's been fixed, searched for, etc. It'll stay taped.

We got back to Austin a week ago. Our house was a clean mess. Clean because it had been professionally cleaned. A mess because we arrived back to our house after being gone since April. Almost 5 full months. Not much different than the past summers since 2010, but all together different.

Previously, we'd left Austin for training and racing and making our living as professional triathletes. Switzerland, Thailand, and Flagstaff Arizona were the main locations. We'd return home late each summer or early in the fall and get ready for the late seasons. Life resumed pretty quickly. And that life pretty typically consisted of swimming, biking, running.

There's so much that I could write here for the umpteenth time. Last week we went to see 'Straight Outta Compton'. Back in the day, you know 1991 or so, I didn't see'Boyz in the Hood' until it was out on video. It was a great movie. 'Straight Outta Compton' was also great, but this blog isn't about 'that'. The perspective, rather MY perspective, of the movie will be different than many who read this update.

I wrote that we went to see a movie because it's a bit of our current routine. We have seen 3 movies in the last 4-6 weeks or so. That is more movies that we have seen in the entire 3-5 years prior. It gets us out, we can go at an off-peak time and avoid people. Every day is a little different and more of the same right now. Amy has more of a routine than I have managed to develop.

I get done what needs to get done though last week I felt quite unproductive. Amy has a few TV shows that she enjoys watching. More than before because we have basic 'cable' here at the apartment. Last week...as part of her routine...she was watching Rachel Ray. I am pretty neutral on Rachel Ray, but if you like cheese in your food, you will be a big fan. It was a repeat.

I stopped whatever I was doing, probably surfing the net looking for possible jobs or something related to the upcoming deer season or maybe something triathlon related. I stopped and watched Rachel Ray because she had Tom Brokaw on her show. He spoke a bit about his Multiple Myeloma diagnosis and life with cancer. Since Amy is not on any TV shows just yet, your insight comes vai my writing and our blog.

I feel like this update would be better served coming from Amy. We went to a "Healthy Living After Stem Cell Transplant" class Thursday of last week. It was a class of three: the instructor who was a nurse of 23 years in stem cell transplant, Amy, and me.

Amy should really be writing this because she is the survivor. "Someone with a cancer diagnosis from the time of diagnosis for the rest of their life" is on the cover page of the materials we received from the class. It will take quite a bit before she writes. This hasn't been a journey of only 2 as those who have followed along have been on it. Having been by her side all but about 6 days during the entire process, I also received a certificate. Those who have followed along via the web or any other way, thank you.

Last week we had a 2 hour course on what we might expect over the next 2 years. Topics that I am sure I'll cover in these updates, most but not all of them! It ran the gamut. Sex, yep talked about that but won't write about it. Types of food to eat and avoid, talked about that too. Home remodeling, that's out. No dust and dirt. Copious amounts of hand-washing, 20 times per day and sanitizer. Visitors. We just might ask you to mask up, but certainly you are going to wash your hands as soon as you set foot in our house. Indoor pools and swimming are out for Amy for at least 3 more months...that one hurt. Flu vaccine, Amy will get one. I will get one. You will get one. At least if you want to see us between October and April. It needs to be the shot not the mist. Getting back to work, both of us. Talked about that.

It's really more than a 'little' milestone. Today Amy's CVC was removed.

I also submitted my first non-triathlon and non-team-marsh blog article today for 'publication'. It was for a 2015 hunting preview. I had an inside track in that I know the editor. But I'll take it.

We've gone through several milestones since December 23. Mainly, waking up each day and getting on with whatever that day holds. Until recently, it has been going to the hospital for nearly daily treatments.

I talked with one of my good friends yesterday. He asked if 100 days was the next milestone, and what is the one after that?

100 days is the first 'real' milestone, and for every patient it is a little bit different after a stem cell transplant. Some seem to sail through with relative 'ease'. Others have more acute GVHD. Others get past the 100 days, and then have chronic GVHD show up.

After 100 days you generally get released to go home. I am sure there will be updates about the new 'new normal' once we get back to Austin.

After 100 days, we'll be making the trip back to Houston every couple of weeks for check ups. Labs. We will coordinate with our Dr at Texas Oncology back in Austin. Amy will have several bone marrow biopsies over the next year to also measure the progress.

Thursday is likely not a hot day for web traffic, but it is better than Friday and certainly not as good as Monday. We're part way through another week. Last week I didn't blog about anything really. I sneaked in a post on Saturday to see if anyone was paying attention. I don't think you were!

Amy is on day 70 post transplant.

We had labs this morning and then over the infusion therapy to have her CVC checked. A lady near us, in the waiting room, puked on herself. It's hard to see things like that. And harder to walk in to MDA each week and see the sheer number of lives that are affected by cancer in some way or another.

Things continue to move forward. These last two weeks have been pretty basic. A week and a half or so ago Amy was 'graduated' off of home IV infusions. We still had 2 Ambulatory Treatment Center visits last week. Monday Amy was 'graduated' from the ATC to regular clinic visits, 1x a week! The regular clinic means that we 'just' go for a Dr visit each week. No 2nd appointment this week and no home infusions.

She still has her CVC (central line for IV infusions) though. We'll remain in Houston until we get the go-ahead to take a day or two away from the apartment.

Another week passes, and we get a week closer to going back to Austin. Amy has passed the 1/2 way point in the post-SCT first 100 days. Day #57 to be exact. If we are able to pass the remaining days as we have these last several, we'll both be pretty happy. The days, for us have been kind of boring. As it was during Amy's treatments in Austin, boring is good. I say it in jest. The picture with the post describes a bit of every day. There are worse problems to have, and we're fortunate that this is the main thing that we are dealing with right now.

It's too hot to be outside much, especially when she (we) need to avoid the sun. The suggestion is to avoid crowds, so avoiding prime time is key. Grocery stores are pretty much germ fests. This week I found myself going to get nail polish, gum since the tastebuds are off, and feminine hygiene products all so Amy could avoid a store.

But like in Austin, boring is good.

Not everyone who has a SCT is as fortunate. To a degree, given the technology of today, patients who have a SCT transplant are essentially trading one set of risks for another. They are trading the potential risks and side effects of a SCT for those that might come with a leukemia (or other blood cancer) treatment that doesn't involve a SCT. Risk vs. reward, when there are not any truly definitive answers at this point.

A 2nd post for the week. "Doctor's Orders". The tweet below the text says it all...

For awhile now, Amy has had a rash develop that isn't uncommon in stem-cell transplant (SCT) patients. It's from "graft vs. host disease". I'll elaborate more next week.

Amy was told to make sure she keeps up her activity, especially for her legs. She's taking high-dose prednisone, a steroid, for her rash. It has some potentially nasty side effects at her dosage. The Dr also said that Amy might have "An overwhelming feeling that she should organize all of the drawers in the house!"

Today the Dr cut the Monday dose in half. That is good, and there should be a continual taper of the steroid over the next weeks.

One of the side effects is loss of strength, particularly in the legs. Ironic. Also possible weight gain. More irony. Amy's Dr said it might be a good idea for her to "Ride your bike, but not like you used to do!" Tuesday she pedaled for 20 minutes.

We are again met with more than a little bit of irony in this situation. As an athlete (both of us) who competed clean for her entire career, Amy is now taking a steroid that helps mitigate some of the side effects of her SCT. Irony in her receipt of numerous blood transfusions. Steroids and transfusions. Illegal for sport. Life saving in our past 7 months.

"We can handle anything because we only have to handle it a moment at a time."

Amy is coming up on being ½ way to the first milestone after her stem cell transplant. Closing in on day #50 of the first 100 days post-transplant. Day #100 is seen as one of the first milestones. We have a "survivorship" class in August sometime. And it is with that you suddenly, yet not so suddenly, realize that some planning is needed.

Last week I headed back to Austin for a few days of R&R. “Running & Running” as opposed to “Rest & Relaxation” might have been a more apt description. There are people that you'd like to see and actually are able to do so. And others that you would like to see, but aren't able to see. So, with grand plans for a few days going back to Austin, I accomplished a little more than ½ of what I planned. I was able to catch up with a few folks while there, go for a run on town lake, and have some down time. I still have a list of things to do, bills to check over.

One thing at a time.

I'm loosely planning on one more trip back before both Amy and I return after the first 100 days. After a SCT and discharge from the hospital, a caregiver is needed 24/7. It is not a literal 24/7, but it is very close. There are still at home medications and other things that are required of the patient and caregiver. 2-3 hours away might be ok, but more than that at a time might not be a good idea. My mom came down, took the care class at MDA, and provided a bit of relief. Amy's parents came in just after, and they spent the weekend with us in Houston. Family and friends have volunteered to help, I'm getting better at accepting it.

59,000 or 59 depending on the reference was Amy's platelet count on Monday. A platelet count of 150 is needed to donate platelets. A platelet count north of 200 is considered normal. It was 31 last Thursday and 59 on Monday. When your Dr. seems happy about that, you become happy about that.

I had never donated blood, platelets or anything else. We came to the July 4 weekend a couple of weeks ago, and Amy was going to need platelets before the weekend that we had 'off'. And, people tend to donate less around the holidays since they travel, etc. So, I made my way down to the blood center at MDA to donate platelets.

The short biology/hematology lesson recap for today. Red Blood Cells carry oxygen. White Blood Cells are generally the defenses against infections, etc. Platelets are essential in blood clotting. RBCs and Platelets are necessary for survival. So are WBCs, but while they are low patients can be on medications to provide some protection.

How much blood or how many platelets you can donate depend on several factors...height, weight, blood counts, etc. The first time I donated I gave 7.5x10^11. The second time a week later, 6.0x10^11. That's 750 billion...if I only had a dollar for every 1,000 or so platelets I donated.

It is kind of a weird feeling to 'want' to go to the hospital, but that is kind of how it was last Friday when the nurse and pharmacist at the ambulatory treatment clinic (ATC) at MD Anderson told us we had a couple of days off.

Our July 4 Independence Day celebration would be the first day in just over a month that we would not be at the hospital. Even still it was another 'holiday' spent during Amy's treatment. Every possible holiday since December 23 has been spent in, between, or near hospitals.

Having the day off was also a bit weird. It is odd to say that there is some bit of comfort when you are in the hospital. It's comforting to know that the Drs, nurses, and other staff are the pros. Being 'in' the hospital as opposed to having to go 'to' the hospital for treatment daily is relatively easy. When Amy was discharged from G17 (one of the stem cell transplant/leukemia floors), we still had to go to the ATC daily. That was a trip that was as short as 5 hours or as long as almost 10 depending on how the wait was and what was needed.

The days that we have to go to the ATC are difficult and long. Those days are what a lot of people think of when they think of cancer treatment and chemotherapy. In this case though, each patient gets their own room as opposed to sitting in a community room receiving any number of transfusions.

With my helium post from Friday, I figured I'd post some lighter reading. That ties the two posts together, but it might go over some of your heads.

A quick update for starters. Amy's counts are slowly climbing. "Hurry slowly" to quote one of our previous coaches. So far so good. We're still going up to the hospital daily for labs and infusions, but they are 'just' fluids, electrolytes, blood when needed, and platelets when needed. We will be very happy campers as long as we have a very boring next 9 months or more.

Also slowly, some of the Drs, nurses, and staff find out that Amy (we) didn't just 'do' triathlons, but excelled at them. Early on when I was working full-time, it took awhile, but one of my co-workers said "Oh, you don't just 'do' triathlons, you win triathlons". This was before I turned pro.

So much for the "How do you tell if a triathlete, vegan, and cross-fitter are in a room?" joke. ("They'll tell you" if you didn't know the answer). Or, their shirt, hat, tat...you name it gives it away.

Continuing on a lighter note. Someone asked me how old the oldest magazine was that I came across at MD Anderson. Dr. offices and hair cut places seem to be prime locations for old or very old magazines unless our collection of Texas Runner and Triathlete magazines count...they'll be downsized upon returning home. I found 3 that were over a year old, but this wasn't a head to toe search of the hospital.The oldest was a copy of 'Oil and Gas Investor' from May 2014. Based on the other magazines around, I suspect that this one was brought from home and left.

Apologies for the video formatting as we didn't plan on using it. It 'should' be landscape formatting instead of portrait.

But, a quick Thank You.

It seems like common sense, but somewhere it also seems to get lost. When you take speech class they tell you to "tell them what you are going to tell them, tell them, and then tell them what you told them." I had drafted up a post, but with today's news it changed course.

The good is that Amy is scheduled to get discharged today. Whoa, what?! Just like everything else, she likes to be early. So, here we are with what seems like an early release. I am thinking that a little bit of procrastination here seems like it might be nice.

Amy is scheduled to get discharged today!

Home to our Houston place away from the 17th floor. G17 they call it. We will still have daily visits to MDA for labs, transfusions if needed, and Dr appointments.

That should be the end of the post...per the intro paragraph, but you know I can't just leave it there.

Last week I posted about going all #GrumpyMarsh. It's not being angry per say, or even grumpy. It's more like having a case of the 'pissed off gene' that ends up with me being grumpy about some current state of affairs. Because all around us the focus is mostly on the negative. It's also too easy to simply surround yourself with overly like minded people and then it can become a never ending cycle of bad, the world is ending, the sky is falling, etc. A negative spiral that spins faster and faster. Constantly surrounded by the negative.

I had a #GrumpyMarsh blog started for this week about things that I think really matter, but don't seem to really matter if that makes sense. I thought better to change it up a bit since there's enough grumpiness in the world already, Adding to it would do little to help things. At times it's tough not to be a little grumpy when you walk in and out of a cancer center daily.

"If you want others to be happy, practice compassion" was the next to last line on a flier I picked up the other day. Fitting.

Fitting also that I waited to post this week's entry since it is Day #13. I've seen it as a lucky number since forever. I had to google "Lucky 13 lure" because it didn't even register when I googled "Lucky 13" for this week's picture. Apparently it's a "Vintage American" clothing company. Lucky 13 for me was a fishing lure that we used to use. An old one from Heddon is pictured. 13 is a prime number as well as a fibonacchi number...two nearly useless facts that I didn't need to google. Though I did need to google the spelling of fibonacchi.

A week after the Day #6 entry we have Day #13. Today was the first day since June 2 that Amy has any white blood cells show up on her daily labs. 0.1.

First the picture. Last week "national running day" was June 3. "National Donut Day" was June 4 or 5. Fitting. Oh and the picture...the human body is essentially a donut. Skin, muscle, organs, and bones with a hole through the middle. Yep, your mouth all the way to the other end...an actual hole in a donut. Not to be confused with donut hole, which we used to get on the way to early morning fishing trips as kids. Keep that in mind, it's part of this post.

I thought I'd post a bit more about the "Re"birthday and the after effects. Because really, this is a way to cure leukemia, but we've still got a ways to go. I say 'I' would post because Amy isn't much on talking these days. She's got a sore throat that feels like she's swallowing razor blades. I'm not being dramatic. Pudding, ice cream, and popsicles are about all that she can handle right now.

I thought I posted way early that Chemo kills quick growing cells. Cancer cells are generally fast growing. Hair is comprised of fast growing cells. That is why many cancer patients lose their hair. Skin. The linings of the GI tract are fast growing cells. Until this round of therapy, Amy had fared pretty well.

The regimen she was on this time, including the radiation, was certainly different. I could list the litany of potential side effects here, but it would be a list that just goes on forever. One of the most common side effects is 'mucositis'. Here's the wiki page.

Today is what the Stem Cell Transplant team calls Amy's "Birthday".

Transplants conjure up images of big cuts in someone's body, and a set of organs being placed into the hosts body to replace their non-functioning organs. In organ transplants, that is the case.

With a stem cell (bone marrow) transplants, the initial procedure is very anti-climactic. As posted, Amy is receiving cord blood because there was not a sufficient adult match found. While many SCT patients receive larger volumes (1 quart/liter) of blood containing stem cells from a related or unrelated donor, cord blood patients receive a much smaller dose. Because the dose is smaller, many (like Amy) receive 2 cord blood units. As our Dr. said babies are "small" and Amy is a "big person" so there need to be 2 cord blood units.

Amy received her first unit of cord blood today just before noon. She received her 2nd around 4pm. Very anti-climactic. Very much like a blood transfusion. The biggest difference was the chemo and radiation prior to to eradicate her bone marrow and make room for the new cells to find where the bone marrow is supposed to be and engraft. Engraftment is like ridding your lawn of weeds and waiting for the grass seeds to grow.

Yesterday Amy hit a milestone of sorts. She finished her 4th day of chemotherapy as part of the 'conditioning' for her SCT. Interesting term 'conditioning'. Today she had a dose of full body irradiation.

A milestone because this was her 5th and what should be her last round of chemotherapy. Ever.

Anyway, the purpose of this chemo and conditioning is two-fold.

First it is to eradicate any additional disease that may be present. Her last bone marrow biopsy was clear of leukemia, which was a definite plus in going to transplant.

Second, the purpose of this chemo and conditioning was to also destroy her existing bone marrow so that no further leukemia cells are produced. Because the old is gone, patients get either new bone marrow from a donor, stem cells from donor blood, or stem cells from cord blood (Amy). Her new cells will be infused on June 4, and it will take a week or more for them to engraft and form new bone marrow. Prior to this process they harvested 1.5 liters of Amy's bone marrow. It was harvested as a back-up only. Depending on the cancer, some patients actually get their own stem cells back, but not in Amy's case.

In case you were wondering, no Amy will not be defending her 70.3 Raleigh title this weekend. Last year, she won the race then headed to Flagstaff for training and later Germany where she would finish 5th at Ironman Frankfurt. When she returned, and had raced with a case of the shingles, that was really the first true inkling that we had something might be a bit off.

Amy made the analogy very early in this process about this being like an Ironman. This was back in probably January. She was in the swim portion of a 140.6 mile race. An Ironman, for those of you who do not know, is a 2.4 mile swim, 112 mile bike, and a 26.2 mile run.

Yes, it is all in the same day. Yes, the clock keeps going. Amy won 4 Ironman races and 2 Iron-distance races (Ironman is trademarked so you can't use their name unless they own the race).

There are two really difficult parts of an Ironman that happen before the race ever starts. The first is getting to the starting line healthy. This is a challenge for a lot of people. Healthy meaning not injured and healthy meaning not sick. If sick or injured, it is generally not a great idea to start the race. For an age grouper it can also be a very expensive proposition to have a DNS (did not start). Nevermind the training 'expense'. The entry is almost $1k and travel can typically total $5k or more.

"I don't know what any of that means. But, GO AMY!!" was the reply to an email update I sent.

I'm writing again this week. Mostly because there are a lot of people who have no idea what this all means. A 'Stem Cell Transplant'. Stem cells are kind of in the news again. They were also in the news several years ago. Skip ahead 2 paragraphs if you want to read more about a Stem Cell Transplant.

In the news recently because of the use of stem cells as therapy in a couple of high profile ex-football players. This from the Mayo Clinic website: "Stem cell therapy, also known as regenerative medicine, promotes the reparative response of diseased, dysfunctional or injured tissue using stem cells or their derivatives." Further "Stem cells can be guided into becoming specific cells that can be used to regenerate and repair diseased or damaged tissues in people." My brother is an equine vet and uses stem cells for orthopedic repair/therapy as well. Equine = horse.

In the news in the past because of limitations placed on embryonic stem cell research and/or funding for such research. As we are apt to do here (read in the US), opinions about this were generally polarized or politicized to whether you were left or right leaning. And, based on my reading and understanding a fair bit of mis-representation of the source of the cells. I will leave it at that.

I did not blog last week mostly for 1 reason.

In ironic fashion, Ironman Texas was last weekend. A race that Amy and I both raced in 2012. Amy raced it in 2013, and I raced it last year. It was on Amy's 2015 schedule. In fact, in November when we went back to AnyLabTestNow to get our self-directed bloodwork done, it was so that we could make sure Amy was getting back to healthy so she could train for IMTX. Cruel irony that lead to a cancer diagnosis on December 23.

I didn't want to blog that things were on-hold once again last week. I had close friends and coached athletes racing, and they needed to be focused on their races. I wanted to go up and watch the race, catch-up with friends and sponsors. Instead I stayed in. We had a virus/sinus setback once, we didn't want another possible one.

Here we are May 19, and it seems like we 'finally' have some concrete dates after navigating the Memorial Day Holiday. Provided all goes well, Amy gets a test dose of chemotherapy Friday. PK testing to be exact. Pharmacokinetic. It is to see how her body metabolizes the chemo that she will get in the days leading up to her stem cell transplant. I will blog more about this as well in the coming weeks. All systems go, and May 27 will be her admit date. May 28 treatment starts. June 4 she will get her cord-blood stem cell transplant/infusion. The new Day 0. I considered the old Day 0 the day of Amy's diagnosis, December 23.

A while back I wrote about the most common comment that I generally received: Take Care of Yourself. That post is still very relevant. I could do better with my staying active goals. Compared to the average American I do really well. I've got quite a few 'zeros' in my so called workouts. I was swimming very well, probably better than ever, in preparation for the USMS National Championship swim meet. And, then things took a turn and we ended up in Houston for what was supposed to be the start of Amy's next phase of treatment. I didn't swim the meet. That was a couple of weeks ago. We (really Amy) are still in hurry up and wait mode as Amy, along with all of TX, seems to have been stricken with allergy and sinus issues. We're looking now at maybe May 17th for an admit date...

The question that I have received most recently has been "How are you doing?" You know, like Joey on Friends or the Bud commercial.

This week is 'Caregiver Week' at MD Anderson. I have not attended any of the offerings specific to this week, but they are there. I might take them up on the chair massage. I 'should' (a word I try to minimize using) have gone to the meditation one. The question of 'How are YOU doing?' is one that is answered in a variety of ways depending on the day.

We talk, in the triathlon world, a lot about "The Process". The process of becoming the best professional triathlete we can be. Not everyone is going to be the best at their chosen sport, job, etc. Not everyone is going to qualify for the Olympics. Not everyone is going to qualify for Kona.

Those are just facts that sport, as well as most things, show. So we focus on "the process" rather than the outcome. And, as a side note I try to get my athletes to focus on "the process" rather than the outcome. You focus on being or doing better from day to day. Focus on making the decisions that you control to be better tomorrow that you were today. Sounds extremely corny, but it's true.

With this journey, we want the best outcome of course. But, rest assured, it is a process. The same but different. Sometimes striving for the best outcomes leads to frustrations.

Amy thought that a post about the stem cell transplant process and some of what it takes to get ready for it might be interesting. It is certainly a departure from where she anticipated being at this time last year. I didn't write last week just because. It was a tough week. A tough week because of the enormity of it all. There is some promising research into more targeted treatments. The Stem Cell Transplant (SCT) process is still considered the best path forward for many leukemia patients.

Last weekend was awesome. The 'Fearless Fundo' was a great time. A lot of money was raised for Amy's treatment, and our stay in Houston. Again, it's difficult to express the thanks other than simply writing 'Thank You' at this time. TRSTriathlon as well as Slowtwitch provided a bit of post-ride coverage.

From Friday - Thursday we have been non-stop. So, my normal mid-week blog gets pushed a day or two.

Undoubtedly, some posts will be more difficult to write or read than others. I've had this one in mind for a bit. Again, I sit down and write a post in one-go. At times going back to make corrections if needed after posted. Someone told me a couple of weeks ago that my updates can bring tears. That's fine, this shit sucks, and there's not an easy way. A really good friend of mine, who lost his brother to a very aggressive cancer, told me to let the tears flow. Another good friend of mine said don't cry lying on your back because your ears will fill up.

We spent a lot of time in waiting rooms this week. I'm spending more time than Amy. Because while she is in for a check/procedure, I am generally in the waiting room. I like people watching, wondering what the stories are. With my global travels that started about 1998, and then ours that started about 2006...we have done a lot of people watching, usually in airports. But even still we took something away from each travel. A week here, a week there, a few months here or there.

A couple of quick items, and that will be the update for this week. This week was one that suddenly passed me by. Monday I wove my way back to Austin from my parent's place. I swung through small town Texas to pick up some deer meat and see one of my good friends. That's always good.

Here we are Thursday, and it's another week where I don't feel like much was accomplished. I have been on the phone and doing quite a few emails all week. Yesterday I was on the phone for quite some time, which brings me to my items.

This Saturday April 11 in The Woodlands Valhalla Sports is putting on the 'Fearless Fundo' ride. It's a poker ride. It will be fun. It might rain. There will be A LOT of items that are available for auction post ride. There will be BBQ. I don't know what else there will be, but it will be a good time. Seriously, a LOT of good stuff is up for grabs. I'll try to find a list if possible.

We will also have a bone marrow swab drive again from 11a-2p at the VR Cycling Studio. Be there. This is important. I'll follow-up below. As we have said before and have posted before a stem cell transplant is the way forward for many Leukemia patients. Amy had 1 sufficient match out of a database of more than 20 million people. 1. One. Solo Uno. And that person was 'unavailable'.

I could have had soooo much fun with selecting a picture for this one! There is just too much crazy going on in our World right now. By 'our' I mean mine and the world around all of us.

This weekend in Boulder. Bone Marrow Donor Jam at Colorado Multisport.

Next weekend (April 11) in The Woodlands. Bone Marrow Donor Jam and Fearless Fundo at VR Cycling Studio.

It's been just over 3 months since Day 0. Somewhere along the way I found myself answering when someone asked me how things were going..."Pretty good, things are pretty good." Or saying "I'm doing well. Amy is good." I thought later, how ironic.

12 months ago, we were both getting ready for Galveston 70.3. I would place 2nd by just 12 seconds. Amy might have won the race had she not had a tweaked calf muscle. Times change and with the times the perspective.

This week has been another hospital stay. Amy is there, but it is a 'we' kind of thing. I go every day when she's there. Monday was one of her all time worst days she said. Chemo continues to work even after you're unhooked. While Amy had been out of the hospital for a week, like the last round of consolidation chemo, she had a fever spike on Monday morning. At least this time we were at the hospital, and didn't have to go to the ER to get admitted.

This article came across my twitter feed this morning. It was a good segue.

I had a long blog drafted up about the insurance question. It's because "Do you have insurance?" was the first question most people asked us. I mean they usually asked "How is Amy doing?" first but not always. It's why we set up the youcaring fund and account. And because people want to help, and we need to let them help.

That blog is still in the queue, but I probably won't post it.

It was a #GrumpyMarsh blog. Because as a friend of mine said about my attitude towards a lot of things "It must be hard for guys like you who actually give a shit." He wasn't saying that he didn't give a shit. He is not from the US and looks at our system from a different perspective. And it was #GrumpyMarsh because another friend and I had a conversation about insurance as well and how it's more about politics than people. That's all I'm going to post about that. Hard because as one small voice, it's hard for people to accept another P.O.V, even those closest to you about polarizing subject. And for whatever reason you want to pick, insurance is one of those.

The cancer journey can be overwhelming. The day to day. The hospital stays. Answering emails, calls, texts. It has the potential to be more-so in the day and age of connectivity. Early on, I realized that the digital overload could be overwhelming. It's true.

Honestly, the outpouring of support early on was overwhelming. It continues to be overwhelming. Overwhelming in a good way. It's cliche to say it, but words can't express the thanks.

Thank you to those who have donated to the 'YouCaring' fund. Thank you for the messages, food, etc. that have come our way.

There are a few other events that we need to mention. They are all wrapped up in one nice package...sort of. They are all taking place in The Woodlands, TX. And, they are all taking place on the same weekend.

• April 11, 2015. The Woodlands, TX. Fearless FUNdo Poker Ride. 90ish miles on the IMTX course. The ride is free. There will be an auction of sorts with items provided by some of our sponsors like First Endurance, Roka, Cervelo, Smith Optics, and BSX Athletics has jumped in. There may be others that I don't know about. Sometimes these things start with idea, we give them the go ahead and folks run. Ben Hobbs (TRS Triathlon) will be there to host the auction. I'd do it, but I speak way too slow. A BBQ as well. All donations will go into our medical fund. Please use the webpage above for additional information. I will not be riding, but I will be there.

I have procrastinated writing this blog or update. And, I've procrastinated because many of you who are following along are here because of sport. In particular, triathlon. And maybe more in particular elite triathlon. This blog is about Livestrong.org. This blog is not about Lance. If you can't or don't want to separate the two, please move on.

I'm not sure why I picked this week. Maybe because I wrote last week that somethings matter. In the grand scheme of things, I think that this matters. Or maybe I picked it because after we visited MD Anderson, another medical professional spoke highly of the organization. Or maybe it's because I've been able to talk with a few of the Livestrong navigators through this process...and will continue to talk with them through this process. And eventually, Amy will go by the offices.

A couple of weeks ago in Austin was AmplifyATX. 24 hours to raise money for local non-profits. We've picked a few over the past couple of years and have made small donations. This year Livestrong was one of them.

It's a bit fitting that it's Friday 13th, though if there was another bad luck day it was the 12th. Good news on Friday 13th is that Amy is 'dentally cleared' for her stem cell transplant.

Amy had her follow-up at MD Anderson with the Stem Cell Transplant (SCT) yesterday. I think that I have written before, but for most patients with blood cancers, or even sickle cell anemia, the best path forward for long term prognosis is with a SCT.

We blogged briefly earlier about setting up a bone marrow match drive. With the help of Michelle, MikeT, and Amy from Sharing America's Marrow...we got 175 new potential donors into the system. Only about 1 in 500 donors will be called to donate.

Circle back or fast forward to yesterday. The initial matches based on the HLA typing done in Austin were 9, but 2 were immediately discounted. MD Anderson went ahead with another HLA typing...you know to be sure. They had 6 potential matches, 2 of which appeared to be very good or they were at least very interested in them.

So when they said yesterday that one of the potential donors had been "deleted" from the registry and the other was "unavailable" you can imagine our disappointment. It's not like we wanted a king sized non-smoking room, but it was "unavailable". So we settled for 2 Queens, non-smoking. Or the Royal Blue shirt was "unavailable". I got you the forest green one instead. This is different.

"There's no modesty around here" is how one of the Drs put it before we left the hospital the 2nd time. That was over 2 weeks ago. Last Sunday we ended up back at Seton. After the 1st consolidation round of chemo, Amy had some fevers on Sunday. When you are neutropenic and you have a fever, bad things can happen. When her temperature hit 100.7 we hit the ER, and she was subsequently admitted. Another 6 days in the hospital.

I have 2 blogs to write. This one and one called "The New Normal." But for now this one.

If you can take one thing from this blog: Be your own best advocate.

During Amy's induction round of chemo, she had a few sores develop. It's not unusual. The Drs. and a friend of ours who had AML as a child warned of the possibility of mouth or other sores because of the way chemo works. And, when white blood counts rebound, there's the possibility that they are going to find something that is in your system that doesn't belong and attack it. After all, they fight infection.

Let's just say they were in the 'taint' or 'abc' area. Being cyclists, we were not overly concerned, but of course this is all new to us. Translation to you who aren't cyclists and have stumbled upon this blog for one reason or another: it is the area that "taint your @$$ and taint your b@!!s" or the "@$$ b@!! connection". When we (I) described it, I used "bunghole". The nurse got a laugh out of that. Got it...good.

Amy is not one to go 1/2 way on things. She held one of the more recent records on the 7th floor of Seton Main. 45 days in room #704. It was the record for longest stay. Of course they don't keep official records. It's not like when she held 1 or 2 IM bike course records.

According to the nurses 45 days was about as long as they could remember anyone in recent history staying. She was back for a round of consolidation therapy well after, 6 days for that one. Again, we went back yesterday for some 'energy' as Amy said. A bag of packed red blood cells and platelets...there's more than a small bit of irony in that. With a hemoglobin of 8 and the weekend coming up, our Dr. decided that red cells would be needed before Monday. All told we are up to almost 2 months of time in Seton.

We continue to learn through this. Learn by gaining knowledge. Learn by experience. And one thing that you learn is that just about everyone is passionate about their 'story'. Our story, like everyone else's, continues to be written. Our story will include Dr. Yorio as well as the staff at Texas Oncology. And, certainly the staff of 7-North will be in that story. As will too many to mention of our friends and family. Soon, we'll add to that story the folks at MDAnderson.

First off...the image is NOT Amy. I acquired it from a google search of 'funny hospital gown pictures'. Apologies to the gentleman in the picture if he somehow finds this blog.

Amy is back on the 7th floor of Seton for 'consolidation therapy'. What is that you might ask? Once Leukemia is in remission (yeah!), depending on your risk profile, additional chemotherapy is needed to keep the Leukemia in remission until the next big thing OR to possibly kick the Leukemia. Again, there is some sciencey stuff in there that I am leaving out.

Amy is in the intermediate risk category, and a stem cell transplant is the next major step in the process. That means that she is doing consolidation therapy now before the stem cell transplant, the process could start as early as mid-March or maybe mid-April pending a suitable match.

Generally there are two types of chemotherapy for the treatment of Leukemia. Induction and consolidation. 'Induction' therapy is 24 hours a day. 'Consolidation' therapy is 3 hours of chemotherapy 2x in 12 hours on days 1, 3, and 5. How's that you say? We are athletes, and we run. So, I'll lay it out for you. We'll use 70 miles a week since the math is easy.

"Take Care of Yourself". I can't tell you how many times people have told me that. They aren't talking simply of being "healthy". We've learned through this that in some cases simply "being healthy" doesn't mean anything. Cancer doesn't care whether you are a fit and healthy 37 year old or a fat and unhealthy 70 year old smoker.

"Take Care of Yourself". Swap the first couple of words and you get "Care Take". When a friend, relative, S.O., etc. gets sick, you become their caretaker. Or at least that is what you end up being called.

Being a caretaker is hard, really hard. I'd never say it is harder than dealing with the disease, but it is hard. You are a partner, an advocate, a cook, a trainer, an insurance navigator, everything. The patient has one goal. I knew this. Our stem cell Dr. at MD Anderson confirmed it again.

I'm in a good spot because I don't have a traditional job right now. I coach enough athletes to take care of the day to day living. I'm in a good spot because I don't have a traditional job right now. I can be Amy's 24/7 caretaker.

I'm also in a bit of a rough spot because I don't have the financial stability of the traditional job right now, whether it was before this or after this. But even if I did...it would be difficult to be a true caretaker for someone in Amy's situation. The FMLA only requires up to 12-weeks of unpaid leave. Further, the US is the only major industrialized nation without a national paid sick-leave policy. Not complaining. Educating.

Amy left the hospital today. It was the first time in 6.5 weeks that she was able to get outside, breathe non filtered air, see whatever natural light there was today.

Today was good news. Yesterday Amy had another, I think that is 5 in total, bone marrow biopsies. This one was 21 days after she started her 2nd round of induction chemotherapy . The preliminary results on the blast count in her latest bone marrow was at 1% or less. That means that her Leukemia is in remission right now. A bit of background...

I didn't blog last week. No reason. I've got a lot to write and not a lot to write all at the same time. Blogs are so outdated. There are only a select group that actually read them or have the attention span to get through a blog. But, I'll continue to write and post updates here, and even though posts might get edited a bit, they're pretty well written in one sitting. Besides helping center me, the role of this writing is to carry you along this journey as well.

Last week was challenging. When you are waiting on results, we've found it's a bit like lining up in front of someone who 'might' punch you in the balls. Or, they might give you a hug. Last Thursday, we got what felt like a punch to the gut. Not quite the balls, but close. The first bone marrow biopsy after chemo is usually done on day 14 after the start of the induction chemotherapy.

Saturday January 24 there will be a bone marrow registry match event at Austin Tri-Cyclist on Barton Springs Road in Austin. When you check in for 3M this weekend, cross Barton Springs and get swabbed.

Please see the resource below for more details.

Here is a link with additional information. Whether it is an actual bone marrow transplant or a stem cell transplant, the matching process is the same and is as simple as a cheek swab.

The plan right now is for us to eventually shift to Houston for a stem cell transplant. Between now and then there may be additional chemotherapy. A suitable donor/match must be found, etc. It's a hurry up and wait type process right now.

"Hair is a big damn deal" said Jimmy via email.

I sent a text to a very good friend of Amy's (ours) to ask if when we cut her hair it should be professional or non-professional. I'm a professional engineer. We're both professional triathletes. I am NOT a professional hairdresser. I'm not even an amateur hairdresser!

I was a professional engineer before I was a professional triathlete. I'm in the process of getting back to engineering, though we've been thrown a curveball. For a while during my early engineering career I controlled the narrative about my triathlon life. I was just a co-worker who raced triathlons. That was about it. I think maybe it was after one of the downtown Austin Capital of Texas races when I showed up at work the following week and one of my co-workers said "Oh, so you don't just race, you win races." Essentially until that day I was just a nerdy engineer who had this weird triathlon hobby. That's basically described my life from about 13 years old onward...nerdy guy who did this weird sport of swim, bike, and run.

Great Brandon, how does that relate to your title. It's pretty simple, and my analogy above is marginal at best. A few other quotes from the email will do better than I could ever write...

I haven't read too much about cancer or what a spouse/caregiver goes through during the process. One of my grandparent's had cancer. I didn't really know her and that was in 1978. I'd never really imagined what it'd be like, and I can't tell you what Amy's experiencing. She might write, but I doubt it.

The support has been overwhelming to say the least. That's good, we thank y'all for that. So far the hospital stay for us has been boring. Boring in that no news is good news. It isn't boring for everyone. Nor does everyone have the global outpouring of support that we have received. For that we're grateful.

She has finished her first round of chemo. Her white counts got low, and her immune system was very vulnerable. Chemo attacks fast growing cells like bone marrow and blood cells, hair, skin, etc. As an athlete who prizes red blood cells, hemoglobin, and hematocrit it is tough to see those fall, but they fall as well.

One thing that I've found out is that every conversation is different. The conversation with some of the people that I spoke with on the day of Amy's diagnosis (Tuesday 23 December) and after went very very different. My mom, brother, and sister in law listened in when we spoke to the Doctor. I didn't want to 'mis-hear' anything on that day so I called as soon as I could while we were in the Dr.'s office. With Amy's family, the conversation was very matter of fact. With two of my very close friends and my dad later that evening, I was a mess, a crying sobbing mess.

I said I'd blog, and there might be more blogs earlier than later, we'll see. No fireworks. No champagne. No watching the ball drop. But, it was a celebration of sorts. Amy finished this round of chemo on New Year's Eve 2014. She started on Christmas eve and wrapped up on New Year's Eve.

She wanted pizza, so she got pizza. Not a big one, just a cheese pizza from one of the restaurants near the hospital. I walked to get it, and it was cold. Not MN cold or Roch-cha-cha cold, but it was cold. That's Rochester for those of you who are wondering. I've promised to 'take care' of myself during this period as well. So, I walk a lot right now instead of hopping in the car for quick errands around the hospital. Waling is therapy. Since it is January 1, it's time for me to start the Gordo no zeros and strength train 2x a week. Soon enough I'll start riding back and forth.

Interesting is that Amy's commented that her tastes have changed. I'm assuming it's not unusual at all. We generally eat really lean meats, little dairy, low-ish fat, veggies and beans, and quite a bit of brown rice, sweet and regular potatoes. She commented the other day that it's like she's a vegetarian now. She's been told calories are her friend, so she eats what sounds good.

This is a new blog for us. I find writing therapeutic. I've written posts and blogs and emails only to delete them. I am sure that after the fact I could find something in them that I wish I'd posted. Case in point...I drafted up a year end blog to be posted here on Team-Marsh.com. In retrospect I didn't know just how accurate it would end up being, but not for the reasons that I thought.

I wrote things like "I am ready for what is next", "focus on Amy's racing", "call it a transition", "no regrets". But I didn't post it. I was waiting for December 31 or January 1. It really didn't seem to matter at the time. The last edit on my post was December 22, but it was drafted well before that. This post takes its place. Day 0 was December 23.

On Tuesday, 23 December 2014, Amy was diagnosed with Acute Myeloid Leukemia (AML). The Dr. is optimistic that Amy will respond well to the treatment though it is still very early. Positive vibes, thoughts, prayers, etc. are welcomed.

There has been a whirlwind of information. At this time AML is kind of a 'shit happens' or 'bad luck' diagnosis. There isn't really a single cause to put your finger on. It is a cancer of the bone marrow and blood cells. Because it is 'acute' as opposed to 'chronic' it moves quickly and as such, we needed to as well. Amy is currently at Seton in Austin and has about to finish her 4th of 7 days of chemo.