Yesterday was DAY +19 and today is +20. Unfortunately there isn’t much to tell because we don’t have much information on Kevin’s progress. Apparently now that he is in BMT Clinic, Kevin needs to wait a WEEK to get his CBC blood count results. The results that pretty much show his progress. Apparently, it would take too much time to relay the numbers to the patient and that’s not “how they do things”. Anyone who is a blood cancer OR BMT/SCT patient or caregiver would tell you that is crazy talk! Kevin has ALWAYS received his CBC blood counts the same day since his CML diagnosis. Always. It is important. And don’t tell me “no news is good news” because that is not how it works in blood cancer/BMT world. A platelet count of 30 doesn’t require a transfusion, but it is a HUGE difference than a platelet count of 130!! Same with hemaglobin, etc…. Also, if there is improvement, knowing these numbers lifts the patient’s spirit and makes them feel GOOD about their progress.
Kevin is now even more anxious and feels like he is being left in the dark. Feelings a BMT patient doesn’t need to be feeling and I am furious. I even asked other patients in our support groups if this is standard practice for anyone else to make sure I wasn’t being an overreacting drama queen and just as I thought, it’s not. I was advised by many to escalate the matter because knowing these numbers is very important for a number of reasons. So after making sure Kevin was okay with it, I sent an email to some of the BMT staff last night and if I don’t get a response by the end of the day, I will contact Patient Advocacy. If I need to, I will go higher. It sucks because I HATE doing this. It’s really hard and scary to question people that have your life in their hands and I’m sure most people just stay quiet and accept the unacceptable. But I can’t sit here watching Kevin worry about one more thing that he should not have to worry about.
Yesterday morning Kevin went to his first BMT clinic appoinment, which he was late for because he was given the wrong appoinment information. Then, the nurse did his vitals, which were all relatively good. Except his heart rate is still extremely fast. 116 beats at rest isn’t exactly normal, but no one seems to be concerned about it.
The doctor came in and talked to Kevin for about 10 minutes. He asked him how is eyes where feeling, his mouth, his stomach, etc.. All of which have been okay. Kevin’s eyes are somewhat dryer than normal, but it hasn’t caused much problem. We expressed our concern about the tacro level not being stablized and still high. The doctor said that they would check the level and call us back by the end of the day with the level. Then the doctor gave Kevin some papers to give to the lab for his blood work, told us to call if anything concerning started to happen, told us to come back in a week and sent us on our way.
A nurse finally called back at about 5:00pm-ish to advise Kevin that his tacro level was still high. She asked Kevin if he already took his 9am dose… LOL Of course he did. THEN she asked how many mg of Tacro he was now taking…. Don’t you think they should know the mg that he is on? OMG I was ready to lose my mind at that point. Anyway, she put him on hold, had a conversation with the doctor and came back on the phone to tell Kevin to keep taking the same dose and he SHOULD be fine. That is when Kevin asked if he could have his CBC blood counts and she said she had them, but she would not give them to him because then they would have to give them to every patient and they don’t have time. LOL <— laughing instead of crying or losing my mind.
So now we wait for a response to my email, hope that his tacro levels don’t damage his liver or his kidneys this week since it’s not being monitored daily anymore and watch for infection or Graft Verses Host Disease symptoms, some of which the hospital does not want to know about until 5 days after the onset.
So now we are sitting here wondering why the hell we are forced to LIVE in Ottawa for another almost 3 months and pay a second set of living expenses we can’t afford when we could certainly make the 2 hour drive if we needed to between the weekly appointments and for the weekly appointments. Seems ridiculous to us. And for what they actually DO at these weekly appointments, his regular oncologist could most certainly handle it. I guess we will discuss this when we are in Clinic next week.
Otherwise, we are assuming Kevin is still engrafting nicely since we don’t really know if he is. His eyes were a little worse this morning, but we weren’t given any advice on how he could deal with eye dryness. So I guess we will need to call them and ask. His energy level is still extremely low and doing anything takes the good right out of him, but he is trying to do as much as he can. Hopefully we can go for a walk today, but it’s freezing so I’m probably not going to get him out the door. He is freezing in the apartment while I’m wondering if my hot flashes are being caused by the onset of menopause or the simple fact that the thermostat is set at 25C/77F!! Being frustrated with our current situation doesn’t help either.
Hope that made you smile! Thanks for stopping by! xo