The second bone marrow test for MDS is set for May 10th. We are told we just have to wait two days (until the 12th – the Friday) and we will finally get results.
On April 10th, as I predicted in my head, I get a call in the morning from the specialist’s office asking where my husband was. Despite my asking each GI head doctor if they would stay on top of this, someone dropped the ball. This meant no one told the hematologist in hospital that Bob was still there and that he had to do the bone marrow test himself that day.
I call Bob and told him he’d need to get in touch with the hematologist there and tell him that he was still in hospital and see if he could get the bone marrow test done.
The hematologist comes to see Bob and says he will try to do the bone marrow test on Thursday the 11th or, at the latest, on Friday, the 12th. Now have to wait until Monday for a definitive answer. The test was done on the Friday.
Then, just when you think you can’t take it anymore someone else throws a punch to your gut. My husband was in bed and my step daughter and I were in his room. The hematologist comes in and sits down in a chair next to the bed. He is gentle but has confirmed this with a colleague and he feels compelled to let us know (better we should not have to wait through the weekend – and to that I would agree). Bob has MDS – medium to aggressive.
I can see Bob’s chin quivering. I go to his bed and lie beside him and hold him. I start to cry as the doctor explains the diagnosis but I am bereft and can’t hear what he’s saying. Then I’m sobbing uncontrollably. Bob is whispering to me that it will be o.k. as tears well up in his eyes. My poor, strong stepdaughter is also visibly upset but takes over, asking questions. The doctor leaves at some point and one of Bob’s friends walks in to visit him. My stepdaughter and I ask if he will stay with Bob for a few minutes and he does. They start chatting and I can tell he’s making Bob feel better, or at least Bob is up to putting on a brave face.
My stepdaughter and I leave the room and I fall apart. She grabs my shoulders because I’m sure I will collapse. Bob’s nurse – an extremely competent young man – leads us to an area called the Quiet Room. He sits and talks to us. He brings us water. My stepdaughter tries to comfort me, and her, because my husband, her father, will be living with this blood disease for the rest of his life. If the specialists can’t start treating his MDS (myelodysplastic syndromes) quickly it will, definitely, become Leukemia. In the end that will probably happen anyway.
The problem is that Bob’s pain is still a huge issue. He needs an operation or to stop eating and be put on TPN for months until the white blood cell count is within normal range. Until then surgeons are reluctant to agree to surgery. It is too high risk. It could cause an infection he can’t fight off and he could die. So we move into the weekend with few doctors available to talk to and a diagnosis that will change our lives, most of all Bob’s. And Bob continues to eat because Doctor Number 3 is still pushing food at him.
We think this is the worst that can happen, but we’re wrong. The roller coaster ride just keeps on going.