Diagnosis: Acute Myeloid Leukemia (AML). A Journey

This week has been a tough one. It started pretty well…on Thursday, the 9th, the doctor said George’s inflammation markers were going down and he thought that perhaps the CRS has peaked. That was good news!

Friday, George started having gastrointestinal issues – bloating, gas and occasional diarrhea.

Saturday is when things started to really worsen. He started having pain in his upper back between his shoulder blades and in his lower back/ hip area (George said it hurt in the “tramp stamp” area. Lol) He could not get comfortable at all. Jeannine, my friend and George’s ex-wife stopped by to visit him (we were going to grab dinner together in Philadelphia) and being a nurse, tried to help him find some relief by repositioning him and using pillows.

It didn’t seem to work.

Sunday, the pain in his upper back seemed to have resolved itself, but the pain in the hip bones was relentless. He had been taking oxycontin and Flexeril ( a muscle relaxer) as needed for the pain, and it seems to have helped a bit. He was growing more and more frustrated with the pain because he could not get comfortable at all. It was completely demoralizing.

George’s blood pressure was also elevated. That was odd because he always had such incredible blood pressure. So, they put him on Norvasc.

Monday, when I arrived in the hospital, George’s condition had worsened. He was being treated for high blood pressure, but now his potassium was too high, so he was being given something for that. Also, because of that, he was put on a 24 hour heart monitor during the night. His phosphorus was too high as well, so he had to take something for that. The nurse said the steroids George was taking caused a spike in his sugar/ glucose, so he was getting finger pricks to test his glucose level and shots of insulin when needed. He was also being given fibrinogen injections because that was too low (fibrinogen is a protein that helps with blood clotting). And he was receiving platelet and cryo infusions as needed. A patient may be given a cryo transfusion if they have low levels of any of the clotting proteins it contains. Low levels of clotting proteins put the patient at risk of severe or uncontrolled bleeding. And of course, he continues to receive antibiotics via IV.

While I was there on Monday, a member of the palliative care team came in to see George. They really all worked hard to get George some relief and make him comfortable. She recommended going to a scheduled administration of oxycontin to stay ahead of the pain, instead of taking it as needed. So, he started receiving oxy every 4 hours. The NP who talked with George also prescribed Gabapenitin to take at night to help him sleep. It’s a painkiller normally prescribed for nerve pain and shingles.

On Tuesday, when I came to visit, George seemed more comfortable and was able to rest. I was so thankful to see him sleep peacefully.

He was taken off the heart monitor and was told that everything looked fine, thank goodness.

Because he was on the oxycontin every 4 hours, he was very groggy and had a fuzzy brain, so he didn’t work Monday or Tuesday. If you know George, you know he had to be really out of commission to take off work!

We got the results from the bone marrow biopsy he had done on Nov 8th and it showed 15-18% blasts. Those are pretty awful numbers and caused a momentary panic. But then we remembered that the team had said they didn’t expect any progress in this biopsy, but would be looking to the one on the 22nd of November. So, we wait until then with fingers crossed and bated breath.

I am not going to the hospital today, as I have my mammogram appointment. But this morning, George said he was back at work, sitting at his make-shift desk. He said he is off the antibiotics, which is great! And that they are still pricking his finger to check his blood sugar. I don’t know how he is going to work while taking that oxy every 4 hours!

Dr. Stadtmauer (one of the research docs) came by yesterday evening and said they may look at kicking George out next week! George was both excited and fearful…what if he had been at home when all this crap started happening? He may not have even known if he hadn’t had his blood taken. I told him, I’m sure they won’t send him home if they don’t think it’s safe. It will be so great to get him home…when the time is right. In 3 days, he will have been in the hospital for a month. Wow.