Diagnosis: Acute Myeloid Leukemia (AML). A Journey

It’s been a while since I have written anything. That’s because I feel like we have just been waiting for the show to get on the road and for George to be admitted for his bone marrow transplant. But in reality, a lot has been happening these past couple of weeks.

First, George received the results from his bone marrow biopsy and no leukemia was detected! So, he is still in remission and on schedule for his transplant. We are so thankful for that! He also got the required tests done, namely a PFT (pulmonary function test) and an TTE (transthoracic echo). They had to make sure his heart and lung were in good enough shape to endure the high intensity chemotherapy and full body radiation that make up the conditioning treatment just prior to transplant. He did those a couple of weeks ago and then last week, we had an appointment with Dr. Loren and she sent him downstairs to have a chest X-ray and EKG done after our appointment. He only has to get a CT scan of his leg and he will be done with tests!

The appointment didn’t really give us too much more information. We did learn that there was a donor’s blood in the lab getting cleared and that the donor was a perfect match for George! God bless those who register and donate their bone marrow! Once that is done and all the insurance authorizations have been received, we should get moving with the transplant. A bone marrow transplant isn’t like an organ transplant, where you get a call and hear “We got a liver! Hurry and come to the hospital!” It’s very planned and timed, no rushing or chaos. We were also told that we would be attending a virtual class before the transplant – one for the patient (George) and one for both the caregiver (me) and patient. In the class, we will learn what to expect upon admission to the hospital, what to pack, etc. We did learn a bit more about the conditioning treatment.

The conditioning treatment begins with high density chemotherapy which, to our surprise, only lasts for two days. But it’s really strong, meant to completely wipe out George’s bone marrow. That is followed by three days of TBI (total body radiation) twice a day to kill any cancer cells that may be hiding in the skin, nervous system, bones or testes. More on that later, but needless to say, it’s a daunting prospect.

While we wait to be notified of an admission date, we have been trying to get out (safely) and live as normally as possible, savoring our time together and enjoying the warm weather and outdoor activities.

Today, the oncology social worker called to ask George some questions they many insurance companies require. Questions included things like do you have a caregiver, do you have a home, do you have transportation to and from the hospital for follow up appointments, etc. We took it as a good sign that things are progressing towards his admittance to the hospital. The social worker, Erin, did ask George how he was doing emotionally and George got a bit choked up. He said he was trying to stay positive and was anxious to get going with the transplant, but that he was also nervous and scared and Erin said it is absolutely normal to feel both of those things at the same time. We are very normal then.

So we will continue to wait until George is told it is time to come to the hospital. Dr. Loren estimated that the transplant will take place at the end of June. We will try to make the most of this month while he feels good and can get out and about. Meanwhile, relaxing at home and enjoying the illusion of normalcy.