AML: Mayo Experience

What a strange spring.  Here it is May 2nd and Rochester got 8 inches of snow this morning.  Andy couldn't get the car out of the parking lot and the house shuttles weren't running.  She hitched a ride with a woman who had a large truck, otherwise she would have been snowed in today.  It is still snowing... big, heavy, wet flakes. 

I am still an in-patient at Rochester Methodist.  The mouth sores were pretty bad but the pain meds helped a lot.  Now I am left with what feels like a bad sore throat, which is manageable.  My electrolytes are all messed up so I am getting a lot of magnesium and potassium via IV.  I have also had most of my antibiotics and other meds given IV because I could not swallow the pills.  Today we will work on switching me back to oral meds.  The goal would be to switch me back to outpatient tomorrow. 

There have been a few frustrations during this hospital stay.  Maybe I was spoiled at Sanford Hospital in Sioux Falls, but I sure do miss my Sanford floor 6000 nurses.   There are so many doctors and nurses here at Mayo that there has been a few cases where the left had had no idea what the right was doing.

It's a bit complicated to explain.  Since I was admitted to the hospital through outpatient this time, I have a whole new set of doctors then I had just a few weeks ago when I was admitted through the hematology department.  So we had to go through the whole "getting to know me" phase.  They ran their own tests to find out why my heart rate is a bit high (it's just normal for me).  Pretty much the same thing I did a couple of weeks ago.  In fact, I have not seen any of my original doctor team that started with me on this round of chemo. 

Even the nurses change so often and rarely repeat so I am always retelling my story on pretty much a daily basis.  Sometimes they don't seem to know why I am in here and start asking me all kinds of questions.  Questions I don't feel like answering because it hurts really bad when I talk.  Luckily Mom or Andy have been here to be my voice. 

So the repeating of tests has and all the new faces isn't a huge deal.  Everyone here is quite nice, but because there are so many levels of nurses & doctors involved here (medical, outpatient, hematology, transplant) they seem to get lost in their own shuffle. 

The worst of it was a few days ago when I was admitted.  The doctor there told me my platelet count was 9 and that I would get platelets after being admitted.  But once admitted I got a whole new set of doctors and nurses.  Though we asked multiple times they never gave me the platelets.  The next morning my platelet count was down to 5 (tested at 3am).  It took them until 2pm to actually give me a unit.  In all likelihood, my platelet count had continued to drop.  It got scary because bruises just started appearing all over my body.  I started getting some stomach pain and for all I knew I was bleeding out for the inside. 

Had we not been nagging them so much about platelets I wonder how long it would have taken.   Later the doctor came in and explained that though the notes of my outpatient doctor specified that platelets were needed, no order was submitted and it was overlooked (even though I kept asking the different nurses).  I kind of grilled the doctor about this because the protocol is to transfuse if my platelets are under 15. He said they usually do it if under 10 unless the patient has a history of excessive bleeding.  He never bothered to ask if I did have a history of bleeding, which I do.  Since then we have been playing catch-up and I have had 4 platelet infusions. 

The people here are great, but there are so many moving parts to the Mayo machine.  I miss home and I miss the care I received there.  I have no doubt that the doctors here are among the best there is, but they could sure take a note or two from Sanford Hospital on how to care for the patient.  From the quality of the food to knowing the patients history, I would so much rather be on Sanford 6000 then where I am at today.

This ended up being longer then I though it would.  I'll get results from my biopsy tomorrow and then we will have some real news to tell.  The pain is greatly improved.  Andy is here with me. Mom went home for a few days.  In all, things are progressing well. 

AML: Salvage Chemo - so far so good

So far so good. I don't have a lot of energy so this will be short. I finished chemo on tuesday I think. I've had a higher heart rate, but the tests turned up nothing so they are not worried about it. I had been getting quite restless in the hospital. So since I have been doing quite well, they are allowing me to go to outpatient.

I will have daily hospital visits for now so we have to stay in Rochester for the time being. Bone Marrow biopsy is tentively scheduled for May 1st.

Brent and Jessica briought all the kids down on sunday for a visit. It was a special time to see them and have them in my room. I miss them so much when I am away from them. I am praying this treatment works this time. I need to see them grow up,

Mom and Andy have been with me the whole time, i am thankful for that, There is no better comfort then to have them with me through this. i know there are many parying for me. Please keep it coming.

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.