Friday, September 27, 2013

The Long and Short of It

Parrish had his weekly follow up appointment with the BMT unit yesterday, and we got to have a face to face meeting with his lead BMT doctor. We had a bunch of questions and concerns relating to the latest PET scan and CT, and the doctor had more information (and a new plan), based on his discussions with a variety of specialists. 

First, I was (wrongly) operating under the assumption that a PET scan only showed cancer--that only cancer cells "glowed" on the scan. In fact, other types of cellular masses can glow. A person is given a dye comprised of a sugar substance prior to a PET scan. This substance is absorbed by overly active cells (it is called "uptake"). Cancer cells are extremely active and therefore, absorb a high concentration of this sugar substance which makes them have a really bright glow on a PET scan. However, other types of cells are also overly active--infection sites or areas of inflammation, for example. These cells will also absorb the sugar substance, but not in such high concentrations as cancer cells, because they are not as active. So, a place of infection or inflammation will have a weaker glow on a PET scan, but these spots will still be considered "PET positive" on a radiology reading. 

All of this is to say that the mass in Parrish's lung is PET positive--but it has a very weak glow, which is why the doctors think it is highly unlikely to be cancerous. In addition, there are no other indications on the scan of cancer activity. The team of doctors agrees that the best next step is to perform a CT angiogram on October 7th. This is a type of CT scan that uses an IV line to get better imaging of the heart and blood vessels. Why are they using this scan? One thought is that the mass in Parrish's lung could be a pulmonary embolism, and the CT angiogram will help diagnose this (or rule it out).

If you are like me, you hear "pulmonary embolism" and think really, really bad things. Not all embolisms are the same, and if this actually is one, it is small and would appear very treatable. People who have cancer or have undergone chemotherapy are actually at higher risk for these, so it isn't an uncommon situation (not necessarily what you want to happen, but not unheard of). Parrish is not exhibiting any of the typical symptoms of a pulmonary embolism--chest pain, shortness of breath, swelling contained to one side of the body, etc. But, the doctors want to rule it out.

If the CT angiogram comes back inconclusive, then Parrish will have a biopsy. Because of the location of the mass and its size, doctors won't be able to perform a small needle biopsy. They will have to use a larger needle with robotic assistance. Because of where the mass is, there is a risk that the larger needle could puncture Parrish's lung, which could the result in the need for a chest tube. Thus the reason for first performing the CT angiogram. Everyone involved would like to get an answer without doing the larger needle biopsy and subjecting a post-transplant patient to a potential chest tube.

So, this is the long way of saying, we still don't have any answers. After a long week of hustling to talk to doctors, reading scans, researching and more, we now just have to wait. But, we do have a plan. That is something. And, the BMT doctor is not alarmed by the dip Parrish is having--the fatigue, morning sickness, facial swelling and lower leg/feet swelling. I know, I think it is crazy not to be concerned by these symptoms appearing at 60+ days after transplant and not before. But, clearly, these doctors know more than I do. And, I think this is just all part of it. A bone marrow transplant is a really, really big procedure...and it takes time for a body to rebuild and fully recover. These dips are going to happen, and there really isn't much to do about it. 

The good news is that the doctor gave Parrish the green light to go on his annual fishing trip with dear friends. That has been the goal everyone has been working towards the last few months. This is a trip that all involved look forward to, and these friends have supported Parrish (and me) in truly unimaginable ways the last eight months. I want nothing more than for this group of guys to have a weekend to celebrate their friendship and look forward to many, many more fishing trips in the future. 

Happy weekend to everyone!

Love,
Molly



**And, for comparison's sake, here are a couple of pictures of Parrish from the last month. You can definitely tell a the change in appearance.

Here is Parrish a month ago.
And here is Parrish a week ago. 












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