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.