AML: The Big Elephant in the Room

Now that I'm closer to home we're looking at the next phase of my treatment.  

As it is right now I'm a week from my last round of chemo.  So my counts are still falling and I need platelets and red blood infusions from time to time.  Just like any other round of chemo I'll have another week or so at the "bottom" and then we'll see just what kind of shape things are in.  Hopefully my beat-up bone marrow is able to produce healthy platelets and red blood cells.  We'll also see if the lymphocyte infusion I had on Monday provides a boost to my immune system recovery. 

Beyond that, I have pretty much exhausted my treatment options.  Through all my chemo treatments and the stem cell transplant we've kept knocking the leukemia down but it has never been quite enough. Unfortunately the byproduct of continually killing the weaker cancer cells is that we have created a very acute and drug/treatment resistant leukemia. The drugs that used to work well, just don't any more. 

From here things get kind of heavy and depressing.  To be honest I've struggled to figure out just how much I want to keep sharing about this experience.  It's a lot more enjoyable and in my nature to share messages with a bright side or something I can poke a little fun at.  I'm just not sure there will
be much of a bright side to what is coming.  I've come to the conclusion that I just as well finish the story regardless of whether the bad days outnumber the good days. 

Since my treatment options are limited we now start making decisions about palliative care.  In other words we start talking about improving my quality of life rather then curing my leukemia.  We're having conversations about pain management, blood product replacement and so on.  The good news is that I've got a doctor who understands that for me, the most important thing is limiting the amount of time I spend in the hospital separated from my family. 

So the big question is how much time.  The problem is that no one can answer that one for me.  Optimistically we would all like to have this turn into one of those situations we all hear about where the doctors say that I had 3 months and that was two years ago.  Realistically, when you look at the nature of what I am dealing with that seems quite unlikely.  I guess with the rest of the awesomeness I have to deal with, I make some pretty wicked awesome leukemia cells. 

As long as my body is able to recover enough to produce platelets and red blood cells I have to think things will be easier to manage.  We'll be in a mode where we try to prevent or treat infections and replace blood products as needed.  At least that seems fairly familiar and certainly doable as an outpatient.  At some point however not treating the leukemia means that the cancer cells will overtake the healthy ones.  So the question remains...how much time.   

With no way to answer that we take things from here day-by-day and are making preparations accordingly.  Andy and I are happy to be home. The kids are happy to have me (almost) home. I am going to enjoy every moment I am given.  Even though I am back, I'm still recovering and it is frustrating knowing that time may be limited but I am also held back a bit because of my last chemo treatment. 

We still want visitors. Friends and family are so important to us. I guess by sharing this post we don't have to dance around the big elephant in the room. We don't want people to distance themselves because I am home and they think we want more family time.  We'll find the right balance and I guess I'd rather have people continue to rally around me now that I am home to enjoy it. 

I am so thankful for the unwavering support we've received from friends and family.  It has been a long road.  With treatment over, this particular journey is nearing an end.  I have accepted it. I'm okay with it.  Prayers are still needed.  I'd love to have my sense of taste straightened out if anyone is taking requests. (That's right, of all things, I just want food to taste like food again).  I'll continue to keep writing and sharing memories.  It's a good way to cope with things. 

The fight continues...Miracles happen...

AML - Back to Sanford.

Monday's Donor Lymphocyte Infusion went fine.  The DLI was really nothing special.  It was like getting any other blood product.  Hopefully this will boost my immune system a bit. 

 

With the DLI done, I am pretty much done with what Mayo can do for me.  So we started the conversation about getting back to Sioux Falls. 

 

In fact, I am in transit right now.  They wanted to transfer via ambulance.  Right now I am about half way between Rochester and Sioux Falls. 

 

My preference would be to go home, but there are a few things to sort out with my meds that need to be done inpatient.  At least I will be closer to home and the kids. 

 

So as of this afternoon I am back in Sanford Hospital.   It will be a welcome change to Rochester Methodist.  I'll get all my nurses back and be much more comfortable.  There are lots of smart doctors that treated me at Mayo, but it often seemed like there were too many cooks in the kitchen. 

 

I am feeling fine for the most part.  Some stomach issues mainly due to the doctors messing with my meds.  I think if I get back on the regimen I was on prior to heading to mayo I will be fine.   

 

Looking forward to settling in and seeing the kids tonight.

 

It is a good day. 

AML: My First Trip to ICU

Yesterday was an interesting day.

I woke up early feeling fairly good even though I had not gotten much sleep due to constant interruptions (nurses, machine alarms, 3am blood draws and so on) through the night.  I needed platelets so those were started about mid morning. 

I generally don't have issues with receiving blood products.  I usually get some Benadryl and Tylenol prior to getting an infusion just to be sure.  For some reason I started developing a fever late morning yesterday. 

Fevers aren't unusual for me.  I've had a few low-grade (less than 100) here and there during this stay.  This one was up to 102 which indicated something more significant going on.  In all likelihood there was some kind of infection breaking through.  So generally when a fever hits 100.5 or higher a  number of things happen. First they run blood cultures and urine to see if  they can identify the infection.

Blood cultures are no big deal.  They generally draw blood samples from my PICC and also directly from a vein.  They bottle these up and send them to the lab to see what, if anything, grows.  Results can take several days.  In the past these most often turn up negative, but I have had eColi, MRSA and Aspergillus appear before.  All 3 of these are quite nasty and can cause significant problems when in the blood stream. 

The problem yesterday was that not only did I put up a mid-grade fever, but my heart rate was at 150 beats per minute and my blood pressure was extremely low.  Put these 3 things together and the doctors here (all of them) got a little worked up. So... about mid afternoon yesterday they sent me up to the Rapid Response (Intensive Care) unit.  This unit can more constantly monitor my vitals and quickly administer drugs should my blood pressure keep dropping or should I go into cardiac arrest.  Both were serious possibilities.

You can imagine things move pretty fast in the Rapid Response Unit.  They sent me for more CT scans of my chest and abdomen.  I received extra red blood and platelet transfusions.  And they immediately started pushing fluids really fast.  They have these power cuffs where they can push a liter of fluid into my system in about 15 min.  The normal pumps usually take an hour, which is still quite fast. 

During all this, I felt fine.  Though it was all pretty serious stuff, none of it was causing any external symptoms.  By about 6:00 my fever had dropped and they had pushed about 5 liters of fluid which stabilized my heart rate and blood pressure.  No other drugs or major  medical intervention needed. It turns out I was just really, really thirsty. 

My blood cultures are negative so far and my CT scans are clear except for what is probably a minor irritation in my gut.  The dehydration issues are most likely the result of the chemo. Since my last treatment is today, my kidneys should do a better job of retaining fluid.  In all likelihood, I'll be transferred back out of ICU sometime this afternoon.  Going forward we'll have to watch my kidneys to make sure that no permanent damage was done. 

It was an interesting day to say the least.  Things are still progressing for my Lymphocyte infusion on Monday which opens the door to head home.  For some of the criticisms I've mentioned about the way things work at Mayo, I'll say everyone was at the top of their game yesterday and I was very well tended to by all the right people.

AML: Final Curtain

Well,  we got my bone marrow biopsy results back yesterday afternoon.  It wasn't what we had hoped for but fell in with what we expected.  I am now showing 20% blasts (leukemia) in my marrow.  So we got  10% improvement over the last treatment.. 

We've elected to complete the current course of chemo I am on.  So Tuesday I started chemo again.  I will be done on Friday.  Then we wait a few days and do the Donor Lymphocyte infusion(DLI).  I expect to be transferred back to Sioux Falls (or better yet, home!) by the middle of next week.  I will get any blood products I need as an outpatient at Sanford while we wait for the DLI to do its thing.  So the good news is I will be home shortly and I should be able to be home, home.

As far as prognosis goes, I'll be on wide spectrum antifungal, antiviral, and antibiotic drugs creating a artificial immune system for me.  Time will tell if my marrow can recover enough to produce red cells and platelets I need.  Though I can receive transfusions of those products, I would like to avoid daily transfusions and let my marrow do at least that part correctly. 

When I get out of here we'll just be trying to avoid infections that we can't treat.  Infections will be the biggest risk to me.  But, I don't intend to be holed up at home hiding.  There is still enough living to do.  This could go on for weeks, months or maybe years. No way to know really...  I'll take every day as a gift and want to make something of it. 

We're still getting so much support from all of you and it is very much appreciated.  Thanks for the ongoing prayers and the stories you are all sharing. 

AML: Can I Get a Break

I realize that not everyone follows me on Facebook and I haven’t had the energy to do a blog post myself. Sorry abut that. I’ll catch you up. 

It hasn’t been good news or very many good days.  The biopsy results showed that my marrow still had 30% blasts (cancer).  I guess that is significantly better than the 90% blasts that I started with prior to chemo, but was not the remission we needed and expected.  What poured salt on the wound was that some doctor (resident or fellow) just wandered in and told me the results and then left. (Andy was out for supper).  This place is such a machine…

The next morning my actual doctor (Hogan) came in and actually sat down to have a talk.  Of course Andy wasn’t back from the Gift of Life house yet and was really frustrated to miss this.  Dr. Hogan took me through the options and kind of laid everything out there.  His bedside manner is so much better than the indifferent gentleman (ass seem a bit harsh) the night before. 

So here’s where we are at.  I am still trying to get to a point where a DLI (Donor Lymphocyte Infusion) has the best chance of being successful.  That means another round or so of chemo and more time in-patient in Rochester.  The chemo is 2 days of high dose Ara-C (which has worked well in the past), then 2 days of Mitoxantrone.  I am currently on day 3 of these 2&2 treatments.  At Day 8 (Tuesday or Wednesday), I will have another bone marrow biopsy.  This will tell us if the chemo has lowered my blasts further. The hope is that the blasts are gone.  If so, we will immediately do the DLI.  If I still have blasts, we will decide to do more chemo or just go for the DLI.  Either way is a long shot and if\when we are at a point where the discomfort is too great, we can stop treatment. 

In the meantime, my mouth sores came and went.  I got an infection in my gut (neutropenic colitis), but the antibiotics seem to have taken care of that.  I developed a sharp pain\catch in my left hip and that has passed.  It has just been one thing after another, and it has kept me in-patient at Rochester Methodist (food still sucks).  The drugs are good though, as long as the doctors don’t get in the way.   I haven’t eaten much over the last 2-3 weeks.  I’d say I get less than 500 calories a day.  I didn’t know someone could survive\function on that this long

My current outstanding issues are a prolonged QTC with my heart rate.  This is caused by the chemo & meds they give me and restricts other meds I can use, especially nausea meds.  It puts me at a high risk for sudden heart attack.  It should go back to normal after all the chemo is done but has to be closely monitored.  Also, a recent chest CT (It seems like they have some kind of contest on who orders the most CT scans) showed some spots that the doctors figure is pneumonia.  I just got back from a bronchoscopy to get a closer look.  I had to be transferred to St. Mary’s Hospital for the procedure.  My first ambulance ride, yeah!  Plus side… Fentanyl and Propofol.  But now we wait once again for test results. Pneumonia has always been one of my biggest fears through this.  

Mom,Dad, Tom and Rogene visited this weekend. Andy busted me out on Sunday so we could all go see Iron Man 3. Epic… and a much needed escape.  My appetite is starting to get better.  So perhaps after a mess of bad days things are looking up.  I love the stories everyone is sharing.   If you want to add more of your own, you can comment here or hit my public Facebook page if you want to drop photos.  https://www.facebook.com/CureJonsCancer

My goal now is just to get home.  Whether that is back to Sanford 6000 or truly home.  

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.