AML: Salvage Chemo - Update

So far things are going quite well.  When I arrived at Mayo I could barely walk because of pain in my hip and groin areas.  My heart rate was also high.  A normal resting heart rate for me is about 80-100 beats per minute.  When I came in my resting heart rate was about 125.  The doctor kept asking me if this was normal but up until now, I hadn't paid attention to what normal was for me.

At first the doctors said it wasn't anything to be worried about but they did order some tests which I have mentioned in my prior post.  I was also scheduled to have a CT scan to see if they could find out why my heart rate was so high.  In the meantime we started the chemo. 

When I woke Friday morning I no longer had pain in my hips.  I could walk around with little evidence of the searing pain I had before.  In fact, I felt quite well... better then I have since back in October before this all started again. As an added bonus, my heart rate has returned to normal levels.

When the doctors did their rounds Friday morning, they were quite happy that the chemo acted so quickly to relieve the pain and heart rate.  Their comments led us (Ira and I) to the conclusion that they were much more concerned about my high heart rate then they originally let on. 

I have just started day 3 of chemo.  The doctors are impressed that I have not had an nausea or stomach issues yet.  They even suggested that if I continue to tolerate the chemo this well I may be able to switch to an outpatient some time next week.  The main advantage of being an outpatient is that the food is better. I guess I was spoiled at Sanford.  The food here really is quite poor.

Mom and Dad arrived last night. Uncle Mike is watching the cattle so Dad could make the trip (Thanks Mike!).  The girls are at the Sioux Falls Storm cheer camp today along with their cousin McKinley.  They really enjoy dancing and this is Layla's first time performing with her big sisters. They perform at halftime of tonight's Storm game.

Today they stopped the IV pain meds.  My blood sugars spiked above 300 so I have been getting insulin.  I don't generally have blood sugar issues but I was given steroids yesterday and that resulted in the higher sugar levels. The huge piece of Bunnie's coconut cake from the Canadian Honker also might have had something to do with it (Thanks Ellie!). 

So far so good seems to be the common answer for how things are going now.  Thanks for all the messages.  I can feel the love. 

AML: Salvage Chemo

Here's the plan.  Tomorrow morning around 10 or 11 my chemo will start.  It is called salvage chemo because it is kind of a last effort to kill the AML with chemo.  It is only done when multiple treatments have failed.  It's the most heavy duty, bad-ass chemo I will have had. I met with Dr. Hogan today and we talked things through.  My options were either give this a shot or stop treatments. 

I didn't fight through Nov, Dec, Jan & Feb to give up now.  So we're on. 

The intent it to do the salvage chemo, a bone marrow biopsy at day 14 and then if we have achieved remission, we will try to perfectly time the lymphocyte infusion from my original donor cells (leftovers from transplant) to boost the immune recovery.  Then use new immune system to "Smash Camcer!" said in my best incredible hulk voice. 

Here's the thing the chemo (carboplatin and topotepan) is going to be nasty.  The risk of death during my 5 days of continuous chemo, failure of bone marrow recovery or risk of fatal infection are all much greater then any other treatment I have had.  This really is a hail Mary.   

I didn't get a real good vibe from the chemo team about this treatment. They will hit me with a high dose.  98% of the time, there are mouth and throat sores as a result of the chemo.  If you recall, those same sores from my stem cell transplant were the most painful part of this whole experience.  I am scared of the sores  and scared of this treatment. 

However, I am in a different place then I was in December.  My head is on straight. I am coping better and I just physically fell better then I felt back then.  As long as we don't fry an internal organ, I can fight through the rest. 

I am away from Andy and the kids, but am in good hands.  Andy's Dad is here with me and I am so happy that he is here.  He has become one of my best friends as we have spent so much time together during all the treatments.  Andy will join me Sunday and I am sure I will see Dad and or Mom as soon as the whether and calving let them get away.  As a man of 34 years, I am not ashamed so say that I definitely want my mommy. 

I miss all friends at Dak who I have been away from for far to long.   I give thanks for all the extended family and friends that have lifted me and my family in their prayers and gifts.  The strength in those prayers have gotten me this far.   I know these continuing prayers will carry me through the new treatment.  I am comfortable that no matter what happens now, things will  play out as they should.  I am at peace with that.  I can only promise that I am going to leave it all on the field.

Go figure...The Truman Show is on AMC right now.  I like that show. I guess it seems fitting to close this post as he might...

"Good morning, and in case I don't see ya: Good afternoon, good evening, and good night!"

AML: I'm Not Done Yet

I've got a bit of bad news.  It turns out the Vidaza treatment didn't keep my cancer away for long.  I have relapsed yet again. The treatment itself did go pretty well. My white count was slow to come back but that is how my prior (the bad one) Vidaza treatment went.  This alone didn't raise any red flags.

Last Thursday I was to have another bone marrow biopsy (must look like Swiss cheese back there) This was biopsy lucky number 13 if I have counted correctly.  The intent was to just confirm remission prior to me returning to Mayo for a checkup.  About the same time I started having terrible hip and back pain just like when we first started this journey in Sept 2010.

I got the results yesterday. So in a short timeframe, we had to make arrangements to get to Mayo.  Today I checked in to Rochester Methodist Hospital (Mayo) for what they call salvage chemotherapy.  I don't have a lot of details yet on my planned treatment.  We (Andy's dad Ira is taking first shift this time) arrived about 1:00 and I was settled by two. 

After 2:00 today I had 3 blood draws for lab work, an IV line for fluids and pain meds (my hips), a brand new Picc line for treatment, an electrocardiogram, an echocardiogram, X-Rays to see if we can sort out what is up with the intense pain in my hips.  Tomorrow is another bone marrow biopsy.  They are saying that Thursday they will probably start chemo. 

There are a couple of things that the doctors tell me is unusual.  First the hip and back pain.  But more significantly, my white count is low (1.3) but my hemoglobin and platelets are in the normal range.  Hopefully things get a little clearer as we progress through tomorrow. 

For now, the pain meds have made me comfortable.  I am settled in.  The intent of more chemo is to get remission and then do a lymphocyte infusion from my original donor right away. 

It's a bummer to be away from Andy and the kids.  Andy will join me next week.  It's certainly frustrating to have to go through more of this.  Still, at least there is something yet to try.  After the lymphocyte infusion, we don't have any other options. 

I'm hanging in there as best I can. 

AML: New Treament Going Well

Once again I do a poor job of posting when I am at home.  You would think with all the free time I'd be able to get to it.  It's just been tough to get motivated lately.  That's partly why I am still holding off returning to work.

So there is a fair amount to tell. 

I'll address some of the prior posts that Andy and my Mom wrote.  I was pretty much oblivious to my condition.  I remember just waking up on a Thursday to find I didn't recall much since the prior Saturday.  The pain meds and infections caused.  I totally missed the Superbowl, even though I watched it with friends.  I played Xbox (Halo 4) with them as we traditionally do on Superbowl Sunday and I played pretty much as my awesome self.   I remember none of it.  This was the point Andy was told I may not leave the hospital. Then from my perspective, I just snapped out of it.  I believe all your prayers made a difference.

Since I have been home, my blood counts and immune system recovered fairly quickly.  In fact, when I started my last treatment, my counts were approaching what was normal for me.  I am now doing a Vidaza treatment every 6 weeks or so.  Intent is to keep the leukemia away.

Today I had a Dr. appointment.  It has been almost 2 weeks since I finished chemo (outpatient)  My counts (except platelets) have been minimally affected. My immune system is still in decent shape.  This is all good.  My doctor is very pleased. 

Speaking of my doctor, I have had to select a new one.  My doctor is leaving Sanford. It's all good. I have been in the hospital enough I have met all of them.  I'll likely need platelets next week and I'll keep you updated on how things progress.  I'll go to Mayo in about 4 weeks if my counts are good. 

For now. I am doing well.  I need to get my endurance up, but that will take time. 

I Believe in Miracles...

This is Crys -- Jon's mom. I thought perhaps we needed to update Jon's blog for those that follow from a distance.

I was with Jon in the hospital back in January when a retired minister from Jon's church stopped for a visit. He talked to us about miracles he had experienced in his life. The thing about miracles he said, is that you have to ask for them. And so we asked -- through all the many links of the prayers chains that are continually being offered for Jon, we asked God for a miracles for Jon. As Andy shared with you in her Feb. 3rd blog "Oh Crap", the hospital staff seemed defeated. They doubted that Jon would ever come home. They told us Jon would probably get an infection that he wouldn't be able to fight. They talked about 'supportive treatment' and 'DNR codes'. then on Feb. 11th Andy shared with you our 'glimmer of hope'.

I've learned something about miracles. Sometimes they come in an instant - the 'pick up your feet and walk' kind. But sometimes they require a lot of very hard work, with many ups and downs along the way that will try to test your faith. But the result is still a miracle. Jon is home from the hospital. He's been home for what will be 2 weeks on Friday. It is a slow process, but each day he gets stronger. His blood and bone marrow are clear of any leukemia blasts. He is off of all the pain meds that had his mind so cloudy. He is learning to eat again. His immune system continues to improve -- it is now better than hallway back to normal. But most of all he is home with Andy and the kids and they are treasuring each day.

So what is the plan from here? The doctors want to do more chemo in a week or so to keep the AML from returning. As I understand it,  it will be a different type of chemo -- one that can be done as an outpatient and won't necessarily require a hospital stay unless Jon gets sick. Then perhaps in a couple of months Jon and Andy will go back to Mayo for a consultation.

And so we are trusting in God's miracle and celebrating life. Each day is a gift.

Dare I Say It?

(This is Andy) So a quick recap from where we left off last week....things were as bad as they could be, everything was bleek and dreary and then....

Crys (Jon's mom) called me right away last Monday morning. Jon's labwork was back and there was news to share. Jon's immune system had decided to surprise us with an appearance. His counts were at 13. Neither Crys nor I were sure what to say let alone what to think about it. We both decided to wait and see what Tuesday would bring. 

Tuesday arrived with a slight increase in counts from 13 to 14. Again we were unsure what to think. And so things continued through the week. Slight increases day by day. Jon's counts are now at 156. 

Jon's immune system is coming back but there are still other things that we deal with every day on this roller coaster we are living on. Jon has no appetite whatsoever. He's been on nutrients for over a week. Jon has severe nausea which seems to be motion activated. 

The hardest thing that we are dealing with right now ( or at least it's the hardest for me to deal with) is that Jon has times where he isnt lucid. He's asked questions that he should know the answer to. Or he tells me things that don't make sense. I'll spare you all the details. There's a number of things it can be blamed on: meds, chemo-brain, poor nutrition, stuck in the same room for 8 weeks. As long as I can blame it on something else because that is not my Jon.

So we are taking each day one day at a time, but dare I say it...

There appears to be a glimmer of hope.

Please continue to pray for my Jon. Give him the strength, hope and love he needs to make it through each day. 

I found the following quote posted on the Facebook page of one of Jon's friends. This struck me enough that I had to write it down and have read it over and over again this week....

So we don't look at the troubles we have right now; rather we look forward to what we have not seen. For the troubles we have will soon be over, but the joys to come will last forever. 2 Corinthians 4:18

Thank you all for riding this roller coaster with us.

Oh Crap...

(This is Andy) So whenever Jon writes somehow he always manages to post something quirky, kinda funny, no matter how 'not funny' the rest of his post may be. I can't even begin to attempt that tonight and let me apologize in advance because not only do I have alot to tell, but I also need to catch you up on what's been going on.

You see I've been trying to figure out what to say for a few days. I honestly really don't want to talk about what I'm about to tell you, but I'm a planner so I figure it's best to attempt to prepare everyone for the path that lies ahead.... but let me start at the beginning of last week.

On Monday, Jon had a bone marrow biopsy. The purpose of this biopsy was really not to check if the leukemia was still there, but to send the bone marrow sample with the leukemia in it to a special lab on the East Coast. That lab would be able to try different types of chemo on Jon's leukemia cells in the sample of bone marrow to see what types of chemo the leukemia responded well to.

So Tuesday morning, Jon called me well before 9 a.m. Now this in itself was a surprise as Jon had been struggling with being able to focus in order to make phone calls and send text messages... my initial thought... Oh crap....

But Jon was ECSTATIC on the other end of the phone and though he struggled to tell me the right words for the good news he had, one thing was clear. He had good news. There was NO leukemia in his bone marrow. So not only was the leukemia gone, but there was no need to send the sample to the East Coast lab.

As excited as I was about Jon's wonderful news, I had to wait until after work, after I picked up the kids, and then since my mother-in-law was in town, I was able to eave the kids at home while I went to see Jon at the hospital. Imagine my surprise as I'm walking into his hospital wing to see a chest xray machine and 2 technicians standing next to it right outside Jon's room. Then as I walk into his room I see 2 gowned up nurses taking blood cultures... and my thought again was Oh crap... You see Jon had spiked a fever that afternoon of 102.4 and that immediately calls for blood cultures (so we can figure out what it is) and lots of crazy antibiotics so they can try to get ahead of the infection.

We got ahead of the infection, but it was a rough few days. Turns out it was in Jon's PICC line and come to find out it was the kocula bacteria. What that is, is 1 of a family of bacteria that seem to cause infections in people who haven't had an immune system in a long time, which Jon hasn't.

Now I just mentioned Jon hasn't had an immune system since October. Seriously, since October. We've been hitting Jon with different types of chemo for the past 2 and a half years trying to fight this terrible disease and up until October each time Jon's immune system would come strong within just 3-4 weeks. Now since October a few things have changed. Not only has Jon's body been struggling to get rid of the leukemia, his body has been unable to build back his immune system. Now our families and I have all been wondering why aren't his counts coming back (his counts are his immune system) and I've been hesitant to ask because I wasn't sure if I wanted to know the answer.

Fast forward to Friday.. after a routine dental appointment, I stopped in to see Jon that morning. I was pulled out of his room for a quick heart-to-heart conversation. The topic of discussion: Jon's immune system or lack of one. Basically if Jon's immune system doesn't reboot on its own in the next few weeks then it isn't going to...ever. And you can't live without an immune system, you are susceptible to any and every kind of infection possible. Point taken. I soon left the hospital and stopped to buy paint (because my original plan for the afternoon was to stay home and paint), and then the conversation I had just had settled in.

After a well-timed text message from my sister-in-law, (I had called her back and spilled my news) we ended up at my house talking while painting Nevaeh's new room. And then, dum-dum-dum, my cell phone rings and the voice on the other end says: Dr. Darabi wants to meet with you this afternoon at 3....

Oh Crap...

So I will spare you all the details of that fateful conversation, but the fact remains: Jon doesn't have an immune system. It's not coming back on its own. And realistically, the leukemia is gone for the moment, but not forever. We got lucky this week. The infection Jon got was really, really bad, he's okay now. But how long can he survive without an immune system, and how long should he have to.

I've had lots of heart-to-heart conversations this week, with Jon's parents, his sister, my parents, but the absolute worst was the one I had with Alivia and Nevaeh. It's a conversation no one should have to have with their kids, and we've had way too many of them.

You all need to remember we've been fighting this fight for a long time. Jon's been fighting so hard, for so long - at what point is it too much to ask of him. Chemo is not something that is good for you, it is so hard on your body and the past 7 weeks have been extremely hard on him.

Please don't ask me how I'm doing, how would you be doing if it were you. I know you all want to help and I truly appreciate it, but please don't ask me what you can do to help, because the response in my head every time is "fix my husband" and I don't know anyone who can do that.

So now I am off to bed, in the house that Jon may never get to come home to, that is filled with the four most precious gifts he ever gave me...our babies.