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. 

Ugh.

Parrish had a follow up cat scan last Thursday to see if the spot on his lung had reduced in size after two weeks of antibiotics. Unfortunately, it is still there and no smaller, which leads doctors to believe that the mass is not because of an infection. Definitely not what we wanted to hear. Although the doctors say that it is “highly unlikely” that the mass is cancerous, they are scheduling a needle biopsy this week. Ugh. I have no words, just…ugh.

 

I hear the “highly unlikely” part, but I also live in a world where “highly unlikely” medical issues seems to arise all.the.time. I mean, we have spent the last eight months dealing with a “highly unlikely” recurrence of cancer 18 years after the fact. I am very well-versed in “highly unlikely.”

 

And there are other symptoms. In the last two weeks, Parrish has had unexplained swelling in the face, neck, lower legs and feet. He has been more fatigued; his color has been off. If Parrish were continuing to improve, then it would be easier to explain away this lung issue. But, he is worse now than two weeks ago. This all just feels too familiar, and it is so unsettling.

 

It is also a very ugly reminder that this fear over scans—at 3 months, at 6 months, at 1 year, at 5 years, at 18 years—is going to be with us for the rest of our lives. There is just no escaping it, and that realization feels almost too much to bear right now.

 

Parrish says he isn’t worried. But, his eyes tell me something else. I admit that I am worried, but it wouldn’t do any good to lie. Take one look at me and you will see worry written all over my face. This isn’t how we wanted to be ringing in a new season, not how Fall was supposed to start. Ugh.

 

I hope that I am worrying unnecessarily. I pray that the biopsy will show nothing…that doctors can do more tests and determine that this isn’t a chemo-induced lung problem…that the mass (and Parrish’s symptoms) just go away. I pray that in the days and months ahead, we can worry less and celebrate more.

 

Much love—

Molly

Falling into a Rhythm

With Labor Day behind us, the start of football and Ivey's first day of 4K, I can feel fall (even if temperatures are at record highs). I have always loved fall, and in Alabama, fall might just be the most wonderful time of the year (Roll Tide). But this year, I am really looking forward to fall. I need a new season and even more so, need to put the last few seasons far behind us.

On the health front, Parrish continues to improve, and the BMT folks say that he is ahead of schedule as far as recovery goes. (He is such a little cancer over-achiever!) His counts continue to go up with each clinic visit, and he is slowly gaining weight and strength back. Of course, this isn't to say that he is 100%. Parrish appears to be pretty highly functioning, but he still gets tired easily, especially when hanging out with the boys or in larger groups. He just doesn't have a lot of stamina. He still can't do what he used to. Recovery after a bone marrow transplant is a process, though...it doesn't happen overnight. Really, it takes 6 months to a year to completely recover. So, things are continuing to move in the right direction, but slowly. And, I think Parrish is fully starting to realize just how sick he was and just how long of a process this is. I showed him a picture taken of him last weekend, and he was shocked. "When did I start to look like such a cancer patient?" he asked. And, it is sort of true. He looks (and feels) more like a cancer patient now than he ever did with "regular" chemo treatments.

 

There is also the continued risk of infection. As we head into fall...and cold and flu season...the risk of infection only increases. Six months after transplant, Parrish will be able to get his flu shot (at a year out, he will get completely re-vaccinated...all those baby shots revisited). Until January though, we will have to be really careful regarding the flu. The boys and I will have flu shots early on (not the mist, since Parrish can't be around those who have had a live-virus vaccine). One way others can help with the flu risk is to get vaccinated...and get vaccinated early. Please, if you think you will be around Parrish at all this fall and winter, please get a flu shot. (Okay, stepping off of my flu shot soap box now.)

 

Yesterday, Parrish had a PET scan. The scan looked good, with the exception of a spot on his right lung. The spot doesn't appear to contain cancer cells (as described before, cancer cells "glow" on a PET scan, and this did not). But, it is a spot that was not on previous PET scans. There are a couple possible explanations. It could be scar tissue that has just recently developed from where the chest tube was placed back in February. It also could be an infection that has developed in the lung at the exit site of the chest tube. To be cautious, the BMT team has decided to put Parrish on some strong oral antibiotics for two weeks. At the end of the antibiotics course, Parrish will have a CT scan to see if the spot has gone away, gotten larger or stayed the same. At that point, we can determine next steps.

 

Needless to say, it was not exactly the news we wanted from the PET scan. We wanted an all-clear message, a never-looked-better message. This sort of news just leaves us feeling unsettled. No cancer...but something they're unsure about. I like doctors to be sure. One way or the other. I don't like to throw medicine at something hoping it will work. I'm prayerful that two weeks on medicine and some additional analysis of the scans will provide more clarity and more peace of mind.

 

Until then, we will continue to ease back into a normal routine, which in the fall includes, among other things, work, school, football (Roll Tide), family gatherings, and catching up with friends. For us, this season will also include creating a family rhythm that puts the fear, pain and worry of the last seven months behind us, without losing the perspective these past months have brought us.

 

Much love and happy weekend,

Molly

 

***And, for those who want them, a few recent pictures...


All ready for 4K

So proud of writing his name!

Celebrating Guh's birthday...and the Tide.

Cousins! (and Bama fans in training)

 



So thankful for these three boys!