Game Face

Parrish finished the busulfan yesterday. Today, he has a dose of etoposide (which is already running) and cytoxan. The etoposide is a four hour infusion, and he is hooked up to heart monitors, blood pressure machines and more during the four hours. This means he is bound to his bed for a while. Then, this afternoon, he'll have an EKG before the doctors sign off on his cytoxan dose. He'll get his cytoxan tonight around 8 pm. One of the nurses said that the busulfan is like sweet tea compared to the doses of cytoxan and etoposide. Parrish didn't think the nurse's comment was all that funny. In Parrish's mind, I think he thought he just had to make it through the busulfan. 

Parrish continued to do well over the weekend. We had a visit from his sister and her husband which was good, and all the nurses kept commenting that Parrish didn't even look like a patient. Yesterday, he was a little more puny. His color was off, he was fatigued and he just didn't feel good. Today, the etoposide got the best of him, and he has had some nausea and vomiting. He isn't having a great day. Maybe that nurse was right...

The doctor has decided to put Parrish back on IV antibiotics (vancomycin). This is pretty typical protocol for transplant patients. It is completely prophylactic--they are using it merely to prevent infection as his white counts drop. He will be on this IV antibiotic starting tonight likely for the next two weeks. He has been on oral antibiotics, but they just don't carry the same punch that vanc does. 

The doctor also walked us through the next few days. As I think I have described before, the "transplant" is really like a blood transfusion. On Friday, the nurse will hang a bag of stem cells that will go into Parrish's body through one of the catheters on his external line (transplant day is referred to as "day zero"). It is somewhat of a non-event, really, just an hour or so and the stem cells are in. According to the doctor, most patients feel the worst starting about two days after the transplant, with the height of symptoms coming at day 6 or 7 post-transplant. She was quick to say that while some patients have literally every side effect possible, there are some patients that just sail through. The staff will comment that it is as though they forgot what they were here for. The doctor said she is convinced it is all mental. As is the case with most things, if you've got your game face on, anything is possible. 

I am a firm believer in the game face...it is why I never, ever went into an exam disheveled, bleary eyed and disorganized. I was showered, put together, bag packed and back up pens or computer battery on hand. Even if I was sure I was going to fail whatever exam I happened to be taking, I was going to look like I was going to ace it. More often than not, my game face fooled even me into believing I could do this, that or the other. Obviously an exam pales in comparison to chemo and a bone marrow transplant. But, the game face idea is the same. It is why Parrish wears real clothes, not a hospital gown, and he is going to put on shoes, not slippers. If you don't look like a patient, you won't feel like a patient. It is why he constantly has music streaming and is learning to play chess while he is here. It is why he wants me to send him links to vacation spots where we hope to take the boys someday. Game face on.

This is not to say he won't have side effects or that we will be surprised by them. It is not to say that there won't be really hard days that are physically and emotionally draining. There already have been. And, in fact, today is one of those days. We just don't want to dwell on the bad. Instead, we'll both keep our game faces on, focusing on the end result...on Parrish walking out of this unit into a life that is healthier, stronger and richer because of the journey.

Much love,

Molly

***Update at 4:30 pm: Today has turned into an especially hard day. Parrish's blood pressure has been very low, as low as 74/32, but hovering in the 80s. He has had continued vomiting, dizziness and is really, really pale. His heart rate has also been fluctuating and his oxygen levels were low (but have now come back up). In addition to fluids and Zofran, they have given him IVs of Ativan, a steroid and now an additional antibiotic, all trying to combat the side effects of the etoposide (which can cause this in some patients). A pretty scary day for all involved. Please say prayers that the side effects will wane and that Parrish will get some relief.

***Update at 8:30 pm: Things finally, finally seem to be trending in the right direction. Parrish's pressure got down to 41/28...scary, scary low. And every time he moved, he would vomit (of course, with that kind of pressure, he wasn't doing much moving). But now, he is actually sitting up and even cracking a few jokes. Banks is credited with the rise in pressure....once he arrived, Parrish totally perked up! Clearly I wasn't all that exciting. The nurse just hooked up tonight's chemo...you know, right as Parrish starts feeling better. But, it is a different drug, so we are hopeful that he won't have the same reaction as earlier. Many thanks for all of the prayers today!