On Wednesday (5/8) they decided that I could be released from the hospital and sent home on a pill form of the Vancomycin antibiotic that I had been taking. I'm to continue it 4x per day through the 2 week mark then taper down to 2x and finally 1x as a maintenance/preventative dose. I will stay on the 1x per day dose for as long as I'm continuing on the Cefpodoxime antibiotic, which is the one I take preventatively for blood infections.
Wednesday was also supposed to have been Cycle 2 Day 1 of the clinical trial. That day in my schedule for the trial included a new bone marrow biopsy to see where things were at. Even though I am still currently off the drug, I am technically still part of the study so Heather the PA came to do the biopsy before I was discharged. As always the biopsy was not fun but she could not find any liquid inside the bone to take out. I asked her what this meant and she said it could be 1 of 3 things: 1) she got a bad spot where the marrow just happened to be dry, 2) the marrow is just depleted because of all the chemo, or 3) there is too much disease in the marrow to get an adequate sample.
I of course was worried about it being #3 and Heather assured me she would be calling the pathology lab on Friday to hopefully get me some preliminary results or if not by Friday she would hopefully have some info by Monday.
Shortly after that I was discharged and we made the treck home.
Friday (5/10) I had to go in for just my routine MWF blood draw at the northville lab to see if I needed a transfusion. I already knew the answer because my nose was bleeding again and I could barely breathe if I was standing too long like brushing my teeth or making a bowl of cereal. So regardless of the test results they were going to be getting me in for both blood and platelets.
So we drive to Northville and get there around 11:30. Right as we are parking my phone rings and it is the generic UofM outgoing number so I answer it. I figured it was going to be the nurse asking me what time I was planning on going to get my labs, and i had completely put out of my mind that it was possible for Heather to call me that day with results.
I pick up the phone and I hear the voice of Dr. Bixby on the other end. I don't think Dr. Bixby has ever called me personally, usually it will be a nurse or if it is extra serious news the PA. Hearing his voice brings me back to the reality that we could be hearing biopsy results today and I immediately start to panic because why else would Dr. Bixby himself be on the line. Then he says "I've got some good news, I've been on the phone with pathology and preliminarily they are unable to detect any leukemia"
It took all of my will power to maintain some composure and ask him what this means for the study, for next steps, etc. He said that the big concern is that even though there is no sign of leukemia there is also no sign of my good cells regenerating either. Which is bad. So he has talked to the drug manufacturer and they want me to stay off the drug still for at least 2 more weeks or until my counts recover if that happens sooner. If my counts still arent recovering by my next follow up appointment on May 22, then we will do another biopsy at that time (yay) to see if they can figure out what's going on with my marrow. He also mentioned it might be a possible option that I start the pills back up but at a lower dose.
I obviously am thrilled about the no evidence of leukemia results, but because of the failed good cell recovery they are not calling it remission and it still doesnt put me where I need to be for transplant. I am also terrified about this break from the drugs since they were obviously working, but I cant kill myself trying to save myself so I will continue to stay off of them for safety reasons.
I continued to battle c-diff for about a week after I was discharged. Finally towards the end of the week (around 5/16) I was feeling well enough to leave the house for a couple hours. On Thursday that week we went to the zoo for a couple hours and Friday we went to see Ken Jeong stand up. Things seemed to be getting better.
Then around 5am Saturday (5/18) I woke up with a 102 degree fever. I had a pain in my right armpit and some swelling in my left groin which I suspected was cellulitis based on past infections. We went to UofM ER and I ended up being admitted and put back on IV antibiotics. It was a short stay and I was discharged Tuesday in order to go to my clinic appointments on Wednesday and Thursday.
Wednesday was talking to Dr. Bixby about the fact that my numbers hadnt recovered yet and whether I could be eligible for a transplant if my marrow remained "aplastic" which is basically to say that it isnt making any cells leukemia or otherwise. I got a platelet transfusion and also another bone marrow biopsy.
Thursday was the wound care clinic for a consult on how best to treat the open wound (initially caused by October 2018 cellulitis) that is in my left leg crease. Like imagine the leg equivalent location of an armpit, that's where my wound is. The wound team came up with a plan of action for the wound to be packed with a dissolvable collagen foam and removable gauze strips. It was a pretty intense and painful process.
Friday evening I took a shower and noticed that the areas where I had cellulitis the week before were becoming painful again despite being on pill antibiotics for that infection. Alan took a look and both locations now had an open sore on them. So we called the after hours number and they advised us to go to the ER even with no fever.
So now I've been back in the hospital since friday night (5/24) on IV antibiotics for the cellulitis and waiting on a consult from wound care for the 2 new wounds, which took forever because of the holiday weekend and they finally just came today (5/29). I feel like they really addressed each wound individually and we have a good plan of care for each of them. Also the major wound is much more shallow now it was 0.9 on Thursday and is now 0.3 so that is good.
Other news we got today from the bone marrow biopsy is that my marrow is still aplastic. They dont see any signs of the leukemia but also dont see any signs of the good cells that regenerate the blood cells I need like hemoglobin, platelets, and neutrophils. Also discouraging is that even though there is supposedly no sign of leukemia in the marrow there are circulating blasts in my blood. At this point they are not really sure what to do with me. Dr. Bixby will reach out to the study sponsor to see if its appropriate to give me a cell boosting shot for my neutrophils and he might ask Dr. Alousi at MD Anderson if they would be willing to consider a transplant while I'm in an aplastic state.
So that's where we are at right now, cautiously optimistic about the fact that there is no leukemia in the marrow, but also understanding that because of the additional circumstances of the blasts in my blood and the aplastic marrow this is still far from being considered remission or being ready to move on to transplant.
