Unexpected - follow up appointment

So I was allowed to come home on Thursday, April 23. That was day 37.  I finished my initial induction treatment on day 36 late at night.

So I have been home for almost a week. I am still suffering with awful headaches and some nausea/being sick.  Monday I had my bone marrow biopsy (not as bad as I had thought it would be, but not a ton of fun), and today (Wednesday) I met with Dr. Van Deventer - he is my main doctor for oncology - and I love him.

So this is what I learned today: I need a port installed and that is scheduled for next Thursday, May 7th.  I have to have my port in for at least a couple of days before I use it for chemo and this is the first that we could get it installed.  Therefore, I have my first consolidation chemo treatment on Monday, May 11. I was even given the option of starting on Monday, May 4, but because I didn't have my port installed we had to go with Monday, May 11.

This was a bit much for me.  Dr. Van did say that according to previous treatments I should not wait the 3-4 weeks after induction therapy to do my consolidation therapy. I should do it as soon as I'm ready. Due to me not having a port we pushed out to May 11, but if I had one we would have done it sooner.

We do have a problem with one of the meds that I have been prescribed for chemo.  I will be on ATRA (orally) and Arsenic, or ATO.  You read that right - Arsenic. Not the same as what some wives have used to kill their husbands, etc.... :), but arsenic just the same.  Anyway a problem has been identified with the ATRA. I need it - it's one of the chemo drugs I have to have, but my insurance co-pay makes my ATRA $1200 a month. One thing that could lower the co-pay is if Dr. Van gives me the ATRA during my consolidation therapy - instead of me taking it orally on my own.  If we go that route we probably have to do consolidation at UNC Chapel Hill instead of being able to do this via Waverly Hematology outpatient. That is hard to deal with. I am not driving myself yet. I'm still suffering the effects from the stroke that I had and I can't even do anything on my own at this point - the therapists want me using the walker still. Specifically my right hand is still quite weak and numb. I see the occupational and physical therapists (2 separate people) twice a week. Fortunately, they come to the house and do my appointments here.

So I am technically in a hematologic complete response. My numbers are where they should be, but my marrow is showing that I still have evidence of promyeloctes/blasts, and that my cytogenics are still positive.  Dr. Van is not at all surprised by this and doesn't feel any of this is abnormal based on the fact that I have been diagnosed with APL.

The nice thing is he doesn't feel I need a bone marrow biopsy again until after the 2 cycles of consolidation. He also said that after the 2 cycles of consolidation I would just monitor the cancer with blood tests every 3 months from there. My bone marrow biopsy was not a big deal, but it wasn't fun either.

So if you have stuck with me so far, you have seen - clinically - where I am and what is next. That is where my head needs to be right now. I have been fighting nausea and headaches since I got home and we are trying to get those things under the control. But hearing today that I am not quite where they expected me to be with all my numbers, and that I need to start the next chemotherapy treatments sooner rather than later - that just took more out of me than I thought it would be. I have let it sink in all day, and to be honest, it's just not what I was hoping for today.  Not sure what I was hoping for or expecting, but I don't think this was it.

But I am strong - I got this. I have a few more months of active treatment before I can start to relax. Time to get my head around that.