Relapse *Warning - Contains Onions*

My leukemia has relapsed.  The physicians caught it three weeks ago.  I wasn't very surprised by the news, I'd been in a constant state of fatigue for at least six weeks.  Fatigue has been my only major symptom before being told of my leukemia each time.

The week after diagnosis was spent performing tests to verify the state of my leukemia.  What it came down to was fifty percent bone marrow density and eighty six percent leukemia.  That means that since my bone marrow transplant I've recovered half my bone marrow and as of two weeks ago eighty six percent of that marrow consisted of leukemic cells.  The fancy twist to this relapse: I now have two leukemias.  I have immature T cell ALL, as I have for 20 months, and I have AML, myeloid leukemia.  The AML is likely due to the radiation I received prior to my BMT.

Emily and I consulted with the physicians regarding options, discussed them privately, consulted further and finally, after several days, decided on a course that we felt would likely provide us with the best outcome we could reasonably hope for.

The options were not great.  The options were heartbreaking.  The options forced us to make a decision no one should ever have to make.  We're getting used to making such decisions.

Option 1: Also known as the hardcore option, consists of chemo, chemo, and another bone marrow transplant.  We'd be banking on the graft versus leukemia effect, apparently my leukemia is strong against radiation and chemo, GVL (graft versus leukemia) is the only possible hope for long term survival.  The problem with this option is the very low probability of a successful outcome; it is calculated roughly .4 *.4 *.4 = 6%.  In theory you have something like a 3-6% chance of long term survival.  You have a 40% chance to survive the necessary chemo attempts and achieve remission, a 40% chance to survive the BMT process, a 40% chance of contracting GVHD,  and an unknown % chance of also picking up GVL.  Only one study has been published regarding people in the situation I'm in now.  It was published this month, the data has been collected for over 3 years and there were 31 patients observed.  These patients opted for the second bone marrow transplant procedure.  1 year after the transplant was completed 23 percent were still alive.  3 years after the procedure 11 percent, 3 patients, were still alive.  None have achieved long term survivor status, that takes 5 years.  The physician I spoke with here doesn't believe any will make the 5 year mark, possibly 1.  Option 1 offers a minimum of 10 months combined hospital and recovery time, 1 year of immune suppression, and because a successful outcome requires GVL it also requires GVHD which can take years before you find a balance with GVHD that allows for an acceptable quality of life.  Option 1 is a near guarantee that you will suffer all your remaining days and death is very likely to come for you inside the first year.

Option 2: Palliative chemo with the intention of creating a balance between length and quality of life.  With this course you'd be looking at the first forty percent gateway again because you'd do a round of intense chemo up front which could well lead to death via complications.  If the chemo goes well we would then begin a long term regimen of another weaker chemo that should allow for good quality of life.  It won't stop the cancer but it will slow it.  There may be other decision points in the future where I could do full rounds of chemo to try and live a bit longer.  This option could kill me tomorrow, carry me for 7 months, or it could lead me along to a miracle.  The doctors anticipate 7 months.

Option 3: Hospice.  I would die before 2012 was out.  How's that for a Merry Christmas?

I chose option 2.  I started the least pleasant round of chemo two weeks ago.  Clofarabine was recommended.  I'm hitting the low point of the treatment right now.  I was admitted to the hospital on the third and returned home on the eighth of December having received 5 treatments with Clofarabine.  I spent a week at home while shuttling daily for blood tests and transfusions.  Yesterday I was re-admitted to the hospital, which is where I'm writing from right now, because they cultured bacteria in my blood; I have sepsis, it is a gram positive bacilli.  They may need to remove my central line and replace it because of the infection, we'll know in a day or two.  If all goes well from here I'll be home before the weekend.

Emily and I have had various unpleasant but necessary conversations.  She generally doesn't like talking to people about the details of my condition.  As you can imagine, it's very difficult for her.  She also worries about our boys becoming aware of all the details any sooner than they need to.  Writing this post makes that danger a bit more real.  I'd appreciate if you didn't discuss any of the details around my boys or around children who interact with my boys.

Now, more than ever, I'm enjoying life.  I still have hope.  I hope for something, miraculous or mundane, to come and fix me so that I can spend the next 50 years sharing my life with loved ones.  There is no belief in a long life for Ryan, just a hope.  I believe I will go as the statistics suggest.

This situation is tragic, I can't imagine anything worse than losing Emily.  As it stands she'll have to live through the worst thing I can imagine.  I can't afford to spend the rest of my life acknowledging that fact.  The tragedy warrants grief, more at certain times.  The only reasonable course for me is to acknowledge it as often as Emily needs me to; I try to spend the rest of my time thinking of and doing fun and productive projects.

I meant to post this update weeks ago.  The first week we didn't have answers, only questions.  For the last two weeks I've been so tired that I couldn't write.  Today, thanks to a fentanyl patch and a free day at the hospital, I've felt well enough to get this much of a post written.  There are plenty of questions you may have, feel free to ask me anything.  My thinking is mildly impaired because of the narcotics working to dull the chemo pain.

You are all wonderful.  Thank you for being my friends, supporting me, following my story, and caring about my family.  The support networks that Emily has are my greatest comfort when I imagine her making her way in this life without her partner.  All of her family and my family, all of my friends, all of our shared friends, the girls in her book club, and her friends and co-workers at OrangeSoda, I'm counting on you to keep supporting her as you have so that she can carry on with a wonderful life when I'm not there to be her support.

Some time soon I will write again, probably once I'm out of the hospital.  Until then, as you were.

Jonas and Ryan, 2002 was a crazy year.  I have no idea why Jo looks terrified.  We were happy to have him home alive:

 

The Halloween Advice and Update Column

Life is silly.  Since last posting I've had hundreds of interesting experiences, thoughts, dreams, and ideas.  What I choose to share will be offered with limited context.  This is, of course, all by necessity.  I've long dreamed of a device, method, or magic that would allow for a person to completely experience the consciousness of another; I believe this would bring about world peace.  But we don't have that magic.  We have our senses and faculty.  So I write this for you.  I don't write it hoping, or believing, that you'll ever know me or understand my experience of the world; you won't and you can't.  I write today to offer advice.  We set out looking for comfort only to learn that hard work is life's greatest comfort, life is silly.

Be happy.  Do yourself this favor.  Your emotions are one of the only elements of life that you control.  In most other cases control is an illusion, a very frustrating illusion.  All that you love can be taken from you in an instant, you can't control that.  But you can control your attitude.  So be happy.  There isn't a magical formula, there aren't steps you need to follow; it is a one step process: Be happy!  Now, especially with the uninitiated, there are questions that arise such as "How can I be happy when I'm worried about problem x, y, z, etc..?".  The answer is, quit worrying about issues you can't do anything about and if you can do something about the issue, go do it and do it happily.  Try not to consider yourself a victim, it's hard to be happy when you have the excuse of your victim status as a reason to be unhappy.  I didn't opt-in to cancer.  I don't consider myself a victim.  I'm happy and I've been happy despite the cancer, hospitalization, etc.  Be happy.

Be prepared for the future.  Don't worry about the future.  Tomorrow may not come.  Don't waste today on worry.  You should spend your time and energy on pursuits that you enjoy.  Spend your time with friends, family, and whatever interests you enjoy.  Don't waste your life, it is a time-limited event.  Time is the most valuable resource, worry wastes time.  If I'm going to die tomorrow, I certainly don't want to spend today worrying about it.

Don't spend your time regretting the past.  Perhaps, 20 years ago, you did something that you regret, maybe it was only 30 seconds ago.  Either way, I suggest you get over it.  You cannot undo what you've done.  If you should apologize, do so.  If you can offer to repair or replace something you've broken, do so.  Do not sit and be upset with yourself.  This is terribly common way the people waste their lives.  Prolonged regret wastes time and robs you of an otherwise happy state of mind.  When regrettable situations occur you should do what you can to repair them, commit to avoid similar situations in the future, forgive yourself for your foolishness, and move on happily with your life.

Don't pin your willingness to be happy on outcomes.  Far too often people choose to suspend happiness and replace it with another emotion pending future events.  They say "I'll be happy when it's the weekend" or "I'll be happy when I have a job I enjoy" or "I'll be happy when my son is home safely".  Such thinking is asinine.  Why not be happy now and when the thing you're hoping for happens.  Even better, be happy now and keep being happy even if that thing you're hoping for doesn't happen.  Why choose a less pleasant emotion in the meantime?  You can't control the job you have, how quickly the weekend comes, or whether your child makes it home safely.  Relax and enjoy the life and time that you have while hoping for the best.  If the worst comes it'll be easier to bear it in an accepting and relaxed state of mind.

When the end is near and I review my life as I wait for it to pass, I honestly believe that my greatest regret will be all the times that I choose to be something other than happy.  It already is my greatest regret.  I just don't ever think about it because I don't have time to waste on regret.  Neither do you.

I write this to remind myself of my own priorities and reasoning as much as I do hoping that others will gain some benefit from the reminder as well.

As for my health, we're in a constant state of flux.  I ignore thinking about it as much as possible and focus instead on taking care of myself in the moment.  Fatigue has been winning a battle with me over the past two weeks.  I'll win that battle soon.  Diabetes has backed off, I'm not on any medications.  It appears that the diabetes was steroid induced.  Visited the dentist today concerning teeth sensitivity.  I'll be picking up fluoride trays on Friday.  There is some concern right now about a skin based chronic GVHD.  I'll be going in for a skin biopsy soon to determine if it is indeed GVHD.  If it is, that won't be fun.  I'm still on more than a dozen medications, many of which have very unpleasant side effects.  Hopefully I can keep working away from those as time moves on.

I miss the world, my old life.  I miss going for walks, being in the sun, seeing all of you people, enjoying a meal at a restaurant, feeling well, working, co-workers, enjoying a false sense of control, believing that my behavior was justified, and feeling like I was good at what I did.

My people are doing pretty well.  Jonas and Max are both wonderful and sweet boys.  Emily is, well, Emily. She is rightly idolized by many.  We would all be in great shape if we were blessed with Emily's brains, work ethic, efficiency, wisdom, sympathy, grace, beauty, and general awesomeness.  I'm a very lucky man, to have such beautiful people in my life.

Let's see, for the picture of the... Month?  We'll go with a picture of my peeps in partial Halloween costume:

Monthly Posts? Lazy!

The latest update is unleashed.  My sister, Terri, provided the impetus when she tagged my last post with a note yesterday.  Now, she's visited me more recently than I've updated this blog; she already has most of the interesting information regarding my life.  I'm pretty sure she just likes to keep me busy.  Enjoy!

Dates escape me, weights are inaccurate, sleep is my enemy, and I have diabetes.  Last we talked I was bottoming out.  In the past ~38 days almost everything has gone as I predicted then.  We managed to get my blood product to stabilize.  White, red, and platelets were all headed south and now they are all on the rise.  Platelets are still low but I haven't needed a transfusion in almost 4 weeks.  Previously transfusions were every 3 days.  My weight is currently about 146, so I'm almost 9 pounds up.  That is a very strange 9 pounds, mind you.  It consists mostly of fat and water.  It seems like Cushing's Syndrome decided now was its time to shine.

Diabetes deserves it's own paragraph, don't you think?  So it is real, plain old, adult onset diabetes.  I take a finger prick 4 times a day, I take 10ml of Lantus every night, I require 1-3 insulin shots a day, and without doing all of that my blood sugar level hovers in the upper 200 to lower 300 range constantly.  No one in my family, including my distant relatives, has ever had diabetes.  I'm the winner!  In all likelihood the steroids induced the diabetes.  Hopefully the diabetes will just go away at some point in the future.  However, the doctors have said that they can't make a guess and that they have seen this often and they've seen it go both ways down the road.  We shall see, our good friend time will surely tell us one day.  Until then, hold the sugar.

My dietary options continue to expand.  My stomach, liver, and kidneys seem to be holding up well enough. The only issue I've run into is in relation to highly acidic foods.  Apparently they'll lead to heart burn.  Who knew?  Yeah, everyone else knew.  I've never had that type of heart burn before, unpleasant it is.  I limit highly acidic foods.  Beyond that I eat what I want when I want, it is great.  The only downside is what the radiation and chemo have done to my taste buds.  It'll be a few more months before everything tastes the way it should again.  With fork and spoon in hand, I look forward to that glorious day.

A while back I had bone marrow biopsy number seven.  Six or seven, who can count?  Anyhow, it was far and away the worst biopsy of them all.  It was as bad and as long as the previous worst two put together.  The pillow I bit, swore, and yelled into will probably never be the same.  I'm guessing the poor PA, who was performing one of her first biopsies on me, also won't ever be the same.  I take no comfort knowing that her day was also ruined by my biopsy.  I won't go into all the details but I will say that I won't have another biopsy without very serious sedation, likely general.  This still ranks as only the second most painful experience of my life.

Before going further, and there is a bit further that I'm willing to go, I'd like to share with any who don't already know: The bone marrow results indicate that I have no detectable leukemia at this time.  This doesn't mean that I can't still relapse later, I can.  We all hope I won't, but I'm just putting it out there so you know.  Also, there was 100 percent Jennifer cells inside my marrow.  This is also very good news.  None of my cells remain to fight her cells and her cells are there to fight off any leukemia that may lurk.  All my blood is girl blood, baby!

Here, we'll play a fun game where I rank the pain I've experienced.  Pain is fascinating, especially the idea of trying to quantify pain in a universal or objectively meaningful way, which you absolutely can't.  The worst pain, #1: violent rigors brought on by sepsis is the only pain I've known that I still fear and dread; shaking so violently that I passed out repeatedly from lack of oxygen.  That last biopsy is #2, nothing like repeatedly puncturing bone and extracting marrow if you're looking for a cry of pain.  Other biopsies take spots #3 and #4, I was 32 and 33.  Breaking my arm takes spot #5, I was 31.  Running my foot through the front gear of a bike and the attached chain is #6; I was 7.  A wart removal attempt when I was 11, not numbed properly, the doctor got the needle stuck in my bone and couldn't pull it out, that wasn't even the most painful part of the experience; that's #7, I was 11.  I was hoping to see a top 10 but I don't think I've had all that many extremely painful experiences.  I'm a very careful person.  As you can see, only 2 of the above were self induced.

My current challenges include remembering to take my medicine and staying on top of my diabetes.  I'm also not doing well with diet and exercise.  I generally don't get more than 6 hours of sleep a night and that leaves me uninspired when it comes to staying on top of the day-to-day.  I need to start gathering data, showing myself some improvement.  That always helps.  The problem is starting that process.  I'm all over the place in my daily schedule right now.  It's time to streamline and pull it all together, work harder at getting back to a normal life.  My bone marrow density is 30%, I experience frequent fatigue, I can't control my muscles (this morning my chair ate half my breakfast), and I could go on and on with the physical annoyances that plague.  I don't really let them stand in my way though; I find ways to ignore them using various workarounds.  What I'm rambling about here is a need to refocus, take that away from this awkward paragraph.

The family is doing great.  Jonas and Max are loving school, they both think the teachers they have this year are great.  Emily is still adjusting to here new role as Accounting Manager at OrangeSoda.  She loves working there and loves the people, once she's more familiar with her current role I'm sure she'll love it even more.  I'm able to do some things around the house.  I take care of the boys after school and get them sent off to school in the morning.  I do dishes, take out garbage, clean up in various other ways.  I'm not able to vacuum, dust, and the like due to the tacro and my complete lack of a functioning immune system.  I also can't perform yard work or be exposed to the sun for more than a few minutes a day.  However I am to the point, finally, where we can enjoy tabletop games together and other sit down type activities.  Fancy, eh?

It's been good to get out my monthly post.  Perhaps I can start posting with greater frequency soon.  I hope all of the lovely readers and their loved ones are doing well.  Take care.

Photo of the day, me after visiting the ophthalmologist several days back.  I wanted to do this as an extra large photo but, frankly, even I found it too scary looking; enjoy the medium size Ryan:

The Nader

It's 4:50 a.m. on the tenth of August in the year 2012 and I am still alive.  Despite deadly cancer, blood infections, exposure to maximum limits of radiation, pumping my body full of chemotherapy poisons, becoming an invalid through weight loss (twice), working through a bone marrow transplant and the associated graft versus host disease, and having more transfusions than I could guess at.  I'm something pretty Frankenstein if you think about it.  But I, as was he, am alive.  I'm not so much me as I once was, physically or mentally.

Since this all began last March I've had to first deal with the possibility that I was going to die.  Of course, we all are, but no one should have to spend their time believing it will be soon.  The idea that staggered and pained me for more than a year was the harm that my death would bring into the lives of Emily and my boys.  I've finally moved beyond the pain of that idea and accepted that I've done everything I can do in preparation for it, again, both physically and mentally on my behalf and theirs.  I've created videos, I've created financial stability, I've written letters, and I'm still alive!  I've worked very hard to stay alive.  Hopefully no one mistakes that hard work as a selfish desire on my part.  Were it not for my desire to protect these few I love most I would not have had a bone marrow transplant and I would instead be enjoying chemo induced remissions until those quit working.

So I haven't had any real news in the past month.  So I haven't shared any.  Well, that's part of why I haven't shared.  There's always news.  It's just that, in medical parlance, I've been doing nothing good, I've been approaching one nader after another.  Bottoming out is what I've been doing.  There may be good news though.  I believe my weight may be stable at 137.  If it's stable I can get it to climb.  I was started on 75mg of prednisone and I'm below half that now.  The Cushings is pretty ugly right now.  I have a giant extra chin and my face looks like a huge potato, the hump on my neck is way sexy.  That should all go away too, once I have functioning adrenal glands, perhaps in a couple of months.

More condensed detail: I'm receiving platelet transfusions every 3 days, I don't know why they won't do two bags at once.  I'm visiting the hospital clinic in SLC every week for updates, they do x-rays every other week.  I talked them out of x-rays every week.  I take roughly 35 pills a day along with 7 oral medications and a liter of fluid with magnesium through my central line over 2 hours.  In between that I am attempting to hit a minimum of 3000 calories each day.  My days are a blur of medicine, food, and lying around in bed waking and sleeping at odd times.  Lately I wake up at 4:30 and can't sleep after that.  Today, that netted you all a post.

What does one do to enjoy this whole process?  Not much.  I've converted my bedroom into a very functional place.  I have 20 ways to entertain myself but only one way to be even sort of comfortable.  At my weight and with no platelets a fold in the sheet under my body causes me pain.  To that end, I don't generally wear any clothes in bed and I often have to adjust the sheets underneath me.  Reminds me of the story of the princess and the pea.  So that's my day.  Me.  Naked.  Chilling in bed.  Here's to hoping we're headed for the zenith, starting now.

There are still so many people doing so many kind things for us.  I would hate to miss listing a name so I won't list names.  But, you know who you are and what you've done and I want you to know how much it means to us to have your love and support in our lives.  I've had very few visits over the past month as I generally don't feel well enough.  However, there are those who've been turned away often and I just want them to know that I'd love to visit or take calls but most of the time I don't because I can't.  I would love to visit with my friends and take their calls and I will as often as I can, hopefully with increasing frequency.

Let's do something different for the picture of the month.  This is my beautiful sister Terri and me as children:

Ryan Here, It's Been Awhile

This is my first attempt at a post in weeks.  I wish I'd had the creative energy to write more and keep you all up to date.  Who knows, the way things are going this could be the last update I do for quite some time.  Let me illuminate.

Since leaving the hospital 9 days ago I've had one major problem to combat, on top of everything else that goes along with just having had a bone marrow transplant.  Weight loss, due to steroids, especially muscle loss is my current plague.  I entered the hospital at 163 pounds and a resting heart rate of 65 beats per minute, I'm now just under 140 pounds with a resting heart rate of 90 - 105 beats per minute.  Starting three days ago the vascular issues have caused me to feel constantly dizzy; I white out when I sit, I white out when I stand, I even white out when I go from standing to laying.  It is very unpleasant and has substantially lowered my quality of life.

To fight the problems mentioned I do three things: cardio exercise on my recumbent bike, eat ~3000 calories a day, and lightly exercise any muscle I can every day.  All three of these tasks are very taxing, considering my present condition.

I believe I'm still losing at least .25-.5 pounds a day, hopefully not.  The steroids aren't set to taper off until the beginning of September.  I won't make it that long.  Hopefully I can work out a faster taper with the physicians.  I've seen myself at 130 last year, I really don't want a repeat.  I don't have the strength to rise from the floor at 130.

So, other than those serious issues, life is great here at home.  Well, Emily has a cold.  So I'm dodging that too.  For me it'd be guaranteed hospitalization with pneumonia if she shared the cold.  Having a non-functioning immune system is nothing but kicks and giggles.

The GVHD is going well.  I'm able to eat most things with no problem.  Milk is an enemy still, spices don't play nice always, and I still haven't played with tomatoes or legumes.  I will conquer all eventually.  Lactaid pills work to get me past heavy cheese.  Animal fats don't bother me.  Bacon is my friend.

My world is a bit small today.  I can't seem to bring my mind to the 50000 foot view.  Being fatigued and hurt probably has everything to do with that.  I would like to write about more pleasant realities but I don't think that's about to happen.  And, since my back hurts I'm really incentivized to call it quits here.  All of you wonderful people out there cheering and pulling for Emily and me, thank you.  We're still in the thick of this thing, hopefully that changes over the course of the next two months.  I'm looking forward to being on the mend.

The picture of the day is from earlier this year, Max and I were both hairier than we normally are:

Home!

I'm so tired but I wanted to post that Ryan is home! I brought him home this afternoon and it is wonderful. Ryan says it's surreal to be in his own home and untethered (he's been hooked to a pole in that hospital room for 47 days). We moved out all his stuff, which really does accumulate. We filled all his prescriptions (which filled a paper grocery bag, I wish I were exaggerating). We did a little grocery shopping to find a few things he can eat. Okay, when I say "we" with all these things, I mean me. I would not let Ryan grocery shop or move stuff or think through his medication doses. Right now Ryan is asleep in his own bed, hopefully for quite a few hours (except for when I wake him up to take some meds.) He's down 14 pounds from when he was admitted in May. We'll get all settled tomorrow and get the boys back home. It's all going to be hard but good. I can't wait for the new normal to start. Well, I figured a short post is better than no post. Goodnight.

Watch out- kissing picture!

GVHD Stage 1 Diet

A full week has passed since the last update. How is that possible? I guess it's kind of good that time went quickly. Our days are filled with blood sugar tests and the beeping of the pumps for Ryan's IV meds. I'd like to record the noises of the hospital and mash them up into a dance club hit. I might be too tired.

Ryan is snoozing. I was explaining the rules of cribbage and apparently it was like a lullaby to him. Put him right to sleep. I need to make sure he gets some exercise today. I know that last night he woke up at 1am and decided to do a one-mile walk in the halls. Then he showered at about 3am and went back to sleep. It's a good strategy he has going- you really can only sleep when your body lets you sleep. The steroids make it hard to have a normal sleep schedule. So I know he's going to be upset that he slept through most of the time I was up here, but it's okay. 

Ryan's blood counts are so good that they don't even check them every morning now. He's over 3000 on his white count, 36 on hematocrit, 81 on platelets. Things are great in the blood department. Jenny's stem cells are getting in there and taking charge. The GVHD is what's really slowing things down. Yesterday we sort of maybe bullied the doc into letting Ryan try some solid food. He had just less than half a cup of white rice. It didn't make him worse, so today they let him graduate to the GVHD Stage 1 diet. Very exciting! Ryan had half a piece of white toast with a little grape jelly on it. We'll see how it goes. It's been hard for Ryan to feel like he's stalled all week. So this is progress. They will let him add one food at a time, very gradually, and we'll hope that it doesn't cause trouble. If he does get worse when he takes a new step, then you usually have to start back at square one (ice chips). I think we're in the home stretch, which is awesome, but it can sometimes be the hardest part. You feel like everything is just about to fall apart and you don't know how much longer you can hang on. We'll keep hanging on.

I do wish Ryan was awake enough to do a post. Maybe he'll do that at 1am tonight. 

The boys are staying with Terri and Ryan the past two weeks. I think they're having as good a time as they can in the situation (they adore Terri & Ryan but they're tired of all of this and want things to be normal at home). I keep telling them that they're wishing they could be home but as soon as they do get to come back, they're going to be bored and wish they were playing at their cousins' house. It would be hard to express how grateful we are to Ryan and Terri for all they're doing for us. They are loving and caring for our boys while we can't. It means everything to us.

We've had some great visits with family and friends this week, and have enjoyed every minute of it. Thank you so much for visiting Scott A & B, Terri, Mom & Dad, Christy & Ryan. 

I think that is the update for now. Below, a picture of Becca, who I miss.