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.