AML: Time to Set Some Goals...

This will be one of those posts where things are a little less cheery. There are many ups and downs related to fighting this illness. One tries to put on a happy face especially in situations where there is little that is within my control.

Under normal circumstances I probably would keep some of this to myself, but I keep getting emails from people who are going through similar experiences. Their encouragement motivates me to share some of the more personal aspects of this journey.

The Dr and nursing staff here have become more then a little concerned about how withdrawn I have been during this treatment. I even get visits from the mental health folks here every couple of days.

Now, I have no problem visiting with a psychiatrist every now and then. During my transplant and recovery, I found it useful. In this case, I'm not sure what exactly they expect we're going to accomplish. I was asked if I have any short-term and long-term goals. Something about being asked about my "long-term" goals just rubbed me the wrong way.

I need to provide some details before I go deeper into this... So I'll recap the events of this October. This is going to end up being a long post.

October 1 - I was asked to attend a meeting at work about a "new opportunity". Without going into a lot of detail, I learned I was being considered for a new position. In sort, it was the perfect position for my creativity and experience. The job I always wanted. I was ecstatic.

October 2nd - During a routine checkup at Mayo, I find out I have diverticulitis (intestinal infection). No messing around. 3 days in Rochester Methodist hospital. I was assured this wasn't necessarily related to my transplant. I very much disliked being back in a hospital. Mayo food is horrible.

October 4th - Out of hospital, back to Sioux Falls in time for Becca's benefit downtown. Becca is a fellow AMLer. Great to finally meet her and her family. I even won a fishing trip to Washington on the silent auction . I've never been to the NW part of the US and Dad & I have been talking about visiting Uncle Cliff in Seattle anyway. This trip will be a lot of fun. Really looking forward to it.

October 6th - Travis and Michelle's wedding. A fun day and evening with Andy and friends. It had been a long time since we had been able to get out like that. Andy & I even managed to jitterbug for a song. I've still got it... Still on meds from the infection so missed out on the open bar. Wonderful time and I annihilated those diet cokes.

About this time I'd been putting feelers out about a getaway the weekend after Thanksgiving. Fishing in the gulf, Vegas, a football game somewhere... Pheasant hunting was a week away and I decided it was time to buy my first shotgun instead of using one of the old man's. I was now semi-automatic and ready to rock. Andy and I also decided we were going to surprise the kids with a Disney trip right after Christmas.    Picture Layla running around the house with a tape measure asking if she is tall enough to go yet. 

If you couldn't tell I was ready to move beyond this transplant and AML. Work was falling in place perfectly and I was determined to catch up on some of the living I missed over these last 2 years. So begins the "new normal" and all was good... (begin ominous music)...

Mid week my stomach still wasn't right. No pain from the diverticulitis, but I had no appetite. My meals were getting smaller and smaller and my energy level was going with it. Suspecting that it was my graft vs host in my stomach, we raised my meds to compensate.   I like self medicating.

Friday the 12th, I get called to a meeting at work which I thought was about the new position and getting that whole opportunity under way. Now, when I think about the things that define me as a person it mainly comes back to my family and my work. I'm probably not unique in that way. I've spent 11 years with my current employer and I've enjoyed every minute of it. I enjoy the work, the people and the things we create. I am proud of the work we've done and my part in it. I've had nothing but stellar reviews and have enjoyed a lot of friendships with coworkers and customers alike. To wrap up this part of the story, this meeting was nothing like I thought it would be. Details omitted, but long story short, I'm told the general consensus is I am hard to work with and I am on now on a short leash. This blindsided me and I can honestly say I took this harder then the day my Dr. told me I had cancer. The weekend was miserable (Andy can concur) mainly due to this, but my stomach/energy issues were lingering.

Monday came along and it was time for my weekly blood tests. Tests done, off to work and ready to move forward. Resolved in the fact that I just had one more challenge to overcome. Haven't eaten a decent meal for a few days and wondered why I didn't get a call about my blood tests. No news is good news and it's not the first time they didn't bother to call. Moving on with the week.

Wednesday the 17th. Kids & Andy are at choir. I home because I was late returning from work. Phone rings at 7:30. "Hi Jon. This is Dr. Dirabi..." Oh shit... I let Andy put the kids to bed before I told her that I had relapsed again.

Thursday the 18. Bone marrow biopsy. Not eating. No energy. Told the kids the cancer was back.

Oct 20th. Pheasant opener. Not eating. No energy. Nothing was going to make me miss the pheasant opener even if I had to crawl. It about came to that. Caught up with the group at about 2:00. Blocking and driving truck. The new gun works, but couldn't make after hunt festivities, not even the annual church supper. Crawled into a chair and that was it for the rest of the weekend.

October 23rd. Admitted back into Sanford Hospital. GI scope turns up no graft vs host. It turns out stomach issues are caused by the heavy antibiotics they gave me because of the diverticulitis. Well, I lost 15 pounds anyway. I have a UT Infection. They have to treat that before they start chemo.

So there are the events leading up to my current round of treatment. Remember though, I started this whole story because I was withdrawn and I evidently need some "long-term" goals.

Let's see...Two years of chemo, transplants and more time away from family then with... for what?

Current Prospect: Repeating rounds of induction or maintenance chemo every 3-4 weeks with no real finish line. Constant fear of infections, organ failure or that these cytotoxic drugs finally scramble my DNA so much I contract all known types of cancer simultaneously.

Goals? I had goals...
New position at work... gave up my dream position
Travel plans with friends... Not going to happen
Disney with the kids... Not likely
Anniversary trip with Andy & friends... Nope
Fishing trip to Washington... How?When?

Yes, I am withdrawn. I've been doing this for 2 years now and this single month has had the biggest up and downs of anything during that time.    Look at those plans/goals... those were just a few months out. Care to guess how I feel when I think about watching my kids play their first basketball game, graduate from school, get married...

So yes, I get a little agitated at the suggestion of setting goals from my mental health professional. I don't expect any of my doctors or caregivers to really understand what someone like myself is going through. An experience like this is deeply personal. Experiences and histories unique to every person. It would be helpful if there were more of an emphasis on the metal\emotional side of treating significant illnesses like mine. But that needs to start with understanding the person before jumping right into whatever standard questions\approaches one would generally take.

The mental health guy doesn't stick around very long any more. Maybe I am a little hard to work with.

AML: Round 10:Week 2 - My new chemo

Tuesday was Jonah''s 2nd Birthday.   Andy brought cake and presents and we spent a little time together Tuesday night.  Layla also had her 2nd birthday in the hospital with me, though that was a few years ago. 

It's been 2 weeks since I started treatment again.  There is not much to tell at this point.  As far as I can tell the chemo is doing its job.   My counts have fallen as they should.   I have received platelets and red blood transfusions.  More platelets today some time. 

I'm not working, so time is passing really slow.  I am getting lots of visitors this time though, so that helps a lot.  The highlight of the week is on Tuesdays and Fridays when Doris comes and gives massages.  Wish it was more then twice a week. 

So a bit about my treatment this time....

The chemo I received (Clofarabine) is a bit different from anything I've done in the past.  As I understand it, they have not used it here before, at least not in AML patients.  I received a high dose once a day for 5 days.  Interestingly, my last dose was a little lighter because of hurricane Sandy.  They couldn't get my full dose in from the east coast. 

Generally this particular chemo is used in pediatric (ages 1-21) ALL patients but they are trying it on AML patients that have relapsed following other treatments.   At this point there is no standard protocol for treating me.  I've relapsed too many times and the stem cell transplant didn't work. 

I don't know at this time what my entire treatment plan is.  I am assuming we'll do another round of this chemo again.  I am just hoping the timing doesn't put me back in here over Christmas.  

I have another bone marrow biopsy on Friday (tomorrow) and we  do know that the Leukemia cells (blasts) are no longer detectible in my blood stream.  So preliminary indicators point that my Leukemia is once again in remission, but that has usually been easy for us to achieve.  Keeping me there is the tough part. 

I feel fine for the most part.  Tired on the days my counts are really low, better after transfusions.  No pain, no nausea.  Optimistically I will be out by Thanksgiving. 

AML: Repeal Obamacare = Repeal Joncare?

Ok so I do feel I need to comment upon the upcoming election because it really does affect me.  I have some passionate family members filling may Facebook with all kinds of railings against Obama.   I myself am a pretty moderate Republican but prefer to use common sense rather then any particular party platform. 

When Obamacare passed in 2010 I personally didn't think much of it.  Mainly because it really addressed nothing related to the increasing costs of health care and I was already covered. 

I consider myself a little more educated in this matter now.  I look to the election with only one thing on my mind at the moment.  What happens to me and the millions like me if Romney gets in there and manages to repeal Obamacare?

While most of Obama care's mandates don't take effect until 2014, one of the provisions that is currently in effect, the elimination of a lifetime maximum benefit, is of great personal interest.  By now, I am well over what had been the $1,000,000 lifetime max benefit on my insurance. So as I see it.   Repeal Obamacare = Repeal Joncare.

Look at it this way, health care costs were going up significantly year after year prior to Obamacare.  No one can dispute that.  So the argument that healthcare costs would go up after Obamacare is both true and political fluff.  Costs were going to keep increasing anyway.  All the math thrown around to say the costs would be accelerated or whatever seems to be just guess work, unless we now have a means to foretell the future.  The full Obamacare provisions are not yet in effect anyway so analyzing costs\benefits impacts is touchy when we're halfway through putting it in place. Consider that since the uninsured aren't even paying yet, there is no income to cover current costs.  I'm a bit cynical here but the guys that really get the math\economics behind all this complex stuff are to smart to work in Washington.  None of them agree anyway.  It's just way to complex. 

It comes down to the dollars and cents.  Most people with employer provided insurance will be minimally affected.  In 2014 people with no insurance have to start being insured.  In 2014, the fee is capped at $285 per family, or 1% of income, whichever is greater.  By 2016 if you are uninsured  your insurance costs are capped at $2,085 per family, or 2.5% of income, whichever is greater.  (http://tinyurl.com/cmol6tc) I pay more then that now, but I have good coverage.  That is my choice. 

Obamacare has started to look to me as more of a good starting point rather then a poor idea. Improvements can be made but isn't better to have somewhere to start from the return to the drawing board.  If Romney's message was to replace instead of repeal, he'd probably have my vote.  I really don't care for most of Obama's approach to things.  But, I can't vote for someone pushing for a repeal with no viable replacement leaving me and my family in limbo while they work it out.  Can someone convince me otherwise? I really don't want to vote Obama.  I don't trust that either side really cares about us.  Our elected officials are covered regardless.  It's all about which party wins and which loses.  I don't trust that they can  make any real progress.

Not an expert, but simply looking out for my family.  Anyone want to tell me I am way off base here?

In all likelihood, Romney can't repeal this on Day 1 as he has repeatedly promised he would.  The President can't just do that on his own.  Instead what will happen would be a lengthy battle that will take years to resolve and will distract from any other real progress that could be made.  Isn't that almost as bad\worse? 

Does Repeal Obamacare = Repeal Joncare?  I don't know... but it's got me (and others like me) worried. 

** This message was approved by "The Cure Everyone of Cancer and Everything will be Better" campaign.

AML: Mom, Is My Daddy Being Brave?

Andy hit me with this one the other day.  It took some time to absorb it. 

On the way home from daycare one evening last week, Layla (my 3 year old) asked Andy, "Is my daddy being brave at the hospital?" 

I think Andy's replay was something simple like "Yes, daddy's being very brave."

It never stops surprising me how much my little ones absorb and understand about our situation and this battle with Leukemia.  So it made me think more... Does a 3 year old know what it is to be brave?  Do I?

So I put down a few thoughts, maybe Layla will read these some day and come to know me better.  Maybe I will reflect and remember some things about myself.

Little Layla, you asked if I was being brave....

• If you meant am I scared, but ok with that, then yes, I am being brave
• If you meant am I going to try my hardest not knowing the outcome, then yes, I am being brave
• If you meant am I going to smile when it would be easier to cry, then yes, I am being brave
• If you meant am I going to cry when I need to, then yes, I am being brave
• If you meant am I going to hold on to he things I have instead of those I have lost, then yes, I am being brave
• If you meant am I going to stay connected to others when it would be easier to hide, then yes, I am being brave
• If you meant am I ok sharing my struggles with friends and loved ones, then yes, I am being brave
• If you meant am I comfortable knowing you will be provided for, even though I don't know how, then yes, I am being brave
• If you meant do I fear not knowing what is to come for my little ones... well, daddy's working on this one...
• If you meant am I willing to walk behind a cow without fear of being farted on, well then little Layla, you've got my sense of humor. 

AML: Did he just say he had 2 Immune systems?

If anyone read far enough into my last post, you saw my message about having 2 immune systems.  This post is also related to some questions people have asked about adding the donor DNA engrafting during my transplant?  The biggest question is does all my DNA change?  I didn't have a good answer until recently. 

The answer is no, not all my DNA changed.  That would be quite bad in fact since it would cause significantly more changes.  Think cloning of the original donor... I am not a clone. 

Instead I am a Chimera.  In other words I have 2 distinct kinds of cells\DNA in my body.  My bone marrow\blood cells are those of my donor, while the rest of my cells are still mine. 

Now, lets review.  The bone marrow produces blood cells (red, white, platelets and so on) and is responsible for creating something called lymphocytes which essentially support the immune system.  My original bone marrow started behaving poorly.  Chemo did not resolve it.  So I got stem cells from a non related donor.  The theory is that the donor cells would attack my misbehaving cells and kick them to the curb for good.  Result...cure.

Warning, you are entering a "Things as Jon sees them" area...

Referring to my HLA typing from before (image).  It seems that the most likely cause of my relapse post transplant is probably related to a mismatch in the "Awesomeness" markers (illustration C). 

Though my donor tissue did engraft 100% to take over production of my blood cells.  About 15% of my original immune system was holding on.  (true story).   In illustration C, you see the 6 markers that donors were tested for my match.  100%/6 markers is 16.6% which is in the margin of error for the chimerism tests. Hence that lack of donor awesomeness my body needed to accept the donor cells completely.  (not scientifically proven, but mathematically it works out).  You'll have to trust me, this type of math is how presidents get elected. So it's pretty much  fact. 

Back to reality... 

I do have 2 distinct types of DNA as mentioned.  That will stay that way, though my donor and I did share the same blood type.  My immune system is still 15% (give or take) my original immune system.  The chemo I am doing know will clear that all out.  I am curious to know what will come back.  The ideal scenario, I believe, is that we want a 100% switch to the donor for all things bone marrow.  But we will have to wait and see.  Because my graft vs host was so minor, it leads me to believe the donor cells were unable to distinguish my cells as bad or it didn't have enough time to work.  

Now... with all this knowledge of my dual DNA and extensive viewing of all things NCIS... off to plan the perfect crime.

AML Round 10: Week 1

So Andy wrote the last post.  I was watching football.  She looked bored.   Here status update was right on.  Figured I'd chime in here as well.

I know you've all been following along, but yes I did squeak out an fantasy football win this weekend.  I had 5 starters on bye or injured, but through some clever pickups and all around strategery, I pulled it off.  Thanks for the support.  I am back to 4-4 in the season. 


The abridged version of where I am at now:
Yes I am back in Sanford for chemo again; 10th Round.  (Bummer)
Most Sanford nursing staff is the same so I am comfortable (Awesome)
Yes it is very depressing to have to start over.  (Super Bummer)
I am much happier to do this again in Sioux Falls, closer to friends and family (Bonus)
We're focused on getting me back in remission but haven't really looked beyond that. (1st things, 1st)
My GI biopsy indicated my Graft vs. Host in my stomach is gone (Nice)
One more night of chemo for this round.  Seems to be working as intended.  (I can take it)
I hope to be out of here in time to cook a Thanksgiving meal (Who wants to come?)

Andy and the kids are keeping up their routines which keeps everyone's mind off of all this.  We've a great support network.  Thanks to Holly for organizing & helping Andy with meals.  Bonus is that our kids who are generally pretty picky, are getting variations of the things they like, but are trying new things. 

Some commonly asked questions:

• Can we visit Jon? 
• YES!  I appreciate a heads up incase something is going on (call, email or text), but not critical.  If you are healthy please visit.  I'm not afraid of a little sniffle (wash your hands, wear a mask), but I need to avoid respiratory\pneumonia\flu.  Remember flu mist vaccine is an active virus so I can't be around you for 3 weeks.  Regular flu shot....no problem.    Sorry, no kids under 12, they can't be in my wing.  Please visit. I'm on a ton of preventative meds for most infections, but there is no pill for conversation. 
• What is Andy's schedule?
• Monday - Home 5:30-6 then Alivia off to dance
• Tuesday -  Usually open after 5:30
• Wed - Home at 5:30 then everyone off to church at 6
• Thurs - Home 5:30-6 then Nevaeh off to dance
• Fri-Sun - Varies but generally home after 5:30.
• School night bed time is 8:00.  It's a chore for Andy to get 4 little ones down on her own. 
• How can we help Andy?
• The meals\groceries have been great! 
• Babysitting... some or all of the kids.  So Andy can run errands or come see me. (She needs time away from the house too).  
• Rides to dance for the girls.  Only an hour or so would let Andy focus on things at home a bit.
• She could use visitors too... 
• Best to coordinate with her via Facebook or email.  grannjo1@sio.midco.net
• How are you doing financially? 
• The question no one likes to ask, but is probably wondering the most. 
• Amazingly, even after 2 years, we are doing OK.  Our insurance and some answered prayers (Ex:  Grant for a donor search covered all expenses for that part) have covered pretty much all the medical bills.  I have long-term benefits activated now and there were a few months here where Andy & I were both back working full time.  It's also quite difficult to spend money on food and gas when stuck in a hospital room. 
• I can't understate how important everyone's generosity was to us at the benefit last April.   The money has been used to offset Andy not getting paid over the summer while being my caregiver.  It was much needed for our living and travel expenses in Rochester.  Co-pays for medications.  We also upgraded a few things at home.  Carpets had to be replaced, ducts cleaned post transplant.  We upgraded washer and dryer to high capacity which has made a big difference in time spent doing laundry.  We've been careful knowing the transplant may not be the end of it and we still have saved about half or what was given at the benefit.
• The generosity of everyone has relieved so much stress, which has been priceless.
• What do you need most now?
• Prayers: for healing, for my family, for a miracle
• Time: with Andy, with the kids,with family , with friends... time to live
• Strength and Understanding:  I'm really over this cancer business... really

Ahh... that's enough for now.  I'll have more to say as the days pass.  I've already had enough food channel, travel channel and "Storage Wars\Pawn Stars\fill in reality TV show" marathons to get my fill.

Thanks to everyone that has been visiting this week.  Ira, Chris K., Rogene & Tom, Rick & Julie, Todd & Jane, Jeff, Teresa, & Dawson.  Devon & friends, 1st United Methodist family... hope I didn't forget anyone.   

Tune in next time when both of Jon's immune systems go on strike...  Is 2 really better then 1? 

AML: And here we go again...

This is Andy writing today.

Jon last posted at the beginning of October, when he was dealing with his newly found diverticulitis and had to stay in Rochester for a few days. Jon was sent home after a few days with some heavy-duty antibiotics, but at least he was home. Some of the side effects of the antibiotics were a little weird: an upset stomach, joint and muscle pain, but they were consistent with the expected side effects. But if you would have asked how he was doing, I would've said he was tired, but good.

Jon goes in weekly for bloodwork, so he went in as normal in the afternoon on Tuesday October 16th. Usually the Dr.'s office calls to say labs are normal, but there was no call Wednesday during the day. We were thinking well maybe no news is good news. So I left with the kids to take them to choir, came home later and put the kids to bed. And then Jon told me the news: Dr. Darabi had called while we were gone. Jon's leukemia was back.

*Thank you Dr. Darabi for keeping Jon on the phone for awhile once you found out he was home by himself when you gave him the news.*

Jon had a bone marrow biopsy the following day and then that night we started sharing the news with the kids and our families. Jon was admitted on Tuesday the 23rd to start his chemo, but in the meantime we headed out to the farm for opening weekend of pheasant season.

Every year, Jon and the usual group from his hometown area - friends and family, get together to go hunting. Jon wasn't feeling great - okay to be perfectly honest he felt completely awful, but he sucked it up - so he blocked and he shot one pheasant.

So Jon checked into Sanford here in Sioux Falls on Tuesday night, he was still fighting some stomach issues so instead of starting chemo right away, they did a CT scan of his stomach and a GI scope. They wanted him feeling good and able to fight before they started his chemo. Chemo finally started Friday night. He gets it once a day for 5 days. This will destroy his immune system, so he'll be in the hospital until his immune system is back and able to fight off infections, which typically takes 3-4 weeks. As far as what's next we're just focusing on getting Jon in remission and then we'll take it from there.

Jon's had alot of visitors this week, which is just so wonderful. He loves the company and it provides a good distraction for him from being stuck in this room for a month. Please don't hesitate from coming to visit him, just give him a headsup that you're coming and make sure you're not sick.

Thank you all for your prayers, we need them now more than we did before.