Breathing Room

Post-Transplant PET Scan

I am about 80 days post-bone marrow transplant. 100 days post-transplant is sort of a landmark - acute Graft vs. Host Disease occurs during the first 1-100 days. By Day 100, patients making good progress have their immunosuppressive drugs tapered off, and can return to normal activities like watching movies in theaters, taking public or shared transportation, eating in restaurants, raw foods and imported cheese, etc.

Before they cut down the immunosuppressants, my transplanters did a PET/CT scan. PETs use radioactive sugar to measure the metabolism of living tissues. Cancer burns sugar faster than normal cells, making PET scans the gold standard in detecting cancer. If the PET showed growing disease, they would have to take a more aggressive approach to cutting the drugs in order to quickly do something drastic - giving me additional white blood cells from my brother, or another mini-transplant, or something else. Those measures are considered drastic because they dramatically increase the odds of life-threatening complications like Graft vs. Host Disease. Progressive disease at this stage would also reduce my odds of survival significantly.

I got scanned on Monday, and got the results on Wednesday. All the humans here - Ben, my mom. me - were pretty on edge for 48 hours. That is to say, we were on edge even compared to our generally nervous state for the preceding weeks. The cat, Anastasia, seemed to take it pretty much in stride. Superior lifeforms… My transplanter said the results were 90% positive, 10% ambiguous. He’s not willing to give the all-clear, but he’s happy with how things are going.

The 90% good: no definite disease anywhere on the scan. A bad scan would show multiple, very bright tumors.

The 10% ambiguity: a single lymph node less than 1cm in diameter above the right lung that has higher than normal metabolism.  My transplanter doesn’t think it is disease, but can’t be sure. The only way to be certain would be to cut it out and analyze the tissue. That would require a procedure that would further damage my airway and risk infections (plus the healing would complicate future scans) - diagnostic surgery on immuno-compromised patients is generally discouraged. This node is responsible for draining lymph from the upper right lung area (lymph is a fluid medium for the immune system and the body’s repair mechanisms). I’ve had three surgeries in the immediate vicinity. The last one severely cracked  a rib nearby and cut out a little less than half of the lung. There is a lot of scar tissue and inflammation in that part of my body, normal for a healing surgical injury. When I have seasonal or food allergy attacks, the scar tissue gets noticeably swollen and inflamed. Inflamed, infected or healing tissues also take up sugar at higher-than-normal rates (they light up like cancer does). The only way to distinguish an inflamed node from a cancerous one is to watch it over time - if it gets brighter and bigger, it is most likely diseased.

As I mentioned, if there were a serious problem, they would get me off the drugs as fast as possible and start taking drastic measures. They’re taking things slowly and carefully instead. They are going to scan me again in 6-8 weeks. Normally, at this stage, I’d have to wait 12 weeks between scans (they’re awfully expensive). They’re cutting the interval in half just to be sure of that node.

So, on the whole, this is good news. It isn’t ideal - that would be a clear scan with no ambiguous nodes. In the world of recurrent, drug-resistant Hodgkin’s Disease, though, test results are rarely 100% clear.

Two notes of behavior-explanation:
1) Why did I explain all the science and date stuff before giving you the results? I can see how that would be obnoxious, causing frustrated scrolling/skimming. I tend to the pedantic, verbose, whatever. You could reasonably complain, but kindly do so in another direction: I have to wait months at a time to know if the cancer is gone. Impatient correspondents can consider reading a paragraph or two of background information a bonding/empathy-building exercise. Multiply the time-scale of your frustration a few thousand times, confine yourself to your home, and add the fear of slow death - voila! we’re on the same page.
2) Why am I not ecstatically happy about this? In a way it’s nice that my friends and loved ones still have the presumption to question whether I am suitably happy with my lot. It shows people aren’t overly concerned with sparing my feelings, handling me with kid gloves. You also obviously want me to be happy. My emotional state is consistent with my life situation, which is - with the exception of cancer - pretty fun. Winston Churchill used to call his capricious dark moods the Black Dog. I know the Black Dog, and this isn’t it. I mostly enjoy myself, day-to-day, as much as can be expected. When I am not happy, I am tired, frustrated, lonely or bored, not brooding myself into misery.
I’ve been technical remission since October, when I had that surgery on my lung. That doesn’t mean the cancer is cured. Neither would a completely clear PET scan at this stage. I’ve had brief remissions before. I’ve been here - the disease seemed to be gone, except there were a couple of troubling, ambiguous spots on a scan. A while later, the spots were bigger, brighter, and the disease was back. All cancer survivors live check-up-to-check-up. I’m aware that one can’t live a fulfilling life waiting for the other shoe to drop. One solution to this is positive self-delusion; alchemically transforming cautiously-optimistic news into best-possible. I can imagine that working for folks, but it’s not my way. A man’s got to know his limitations, and my capabilities don’t extend to genuinely convincing myself things are great when they’re gradually improving and subject to reversal. I’m not against happiness and don’t resent congratulations; I’m merely opposed to overstating the case for optimism.

I’m cautiously optimistic and looking forward to having my freedom back. I’ve missed out on a number of important events these last few months, and I’ll be able to travel and see my friends and loved ones again this summer.

In other medical news, the white blood cell battle is ongoing. In Hodgkin’s, Bone Marrow Transplants work - if they work - by mobilizing donor white cells to attack the recipients’ cancer. They also do other useful things, like fighting off the infections one randomly encounters in the course of daily life. Many of the drugs I take - not just the immunosuppressants  - can cause low white counts. Mine were frustratingly low for a while, so the docs started playing around with my medicines. They’re still low, but gradually increasing. If they don’t come up as the suppressants are removed, I’ll have to have a bone marrow biopsy. I’ve had one before, and if you watch House or ER, you’ve seen them on TV. They love to show bone marrow biopsies and lumbar punctures, because they involve huge needles and extreme pain. I’ve never had a puncture, but the biopsy gave me nightmares for more than a year. In the meantime, to keep the white counts at safe levels, I have to get booster shots. They contain a cloned version of a chemical transmitter that stimulates white cell production. The shots are painful on injection, and cause bone and joint pain for days afterwards. I usually get one or two a week.

A related issue is chimerism. These are basically DNA tests on white blood cells. The cells produced by my original bone marrow are genetically different from the cells my brother gave me. They’re sufficiently different that the share of circulating cells originating from the donated marrow can be measured. This is a proxy for measuring the functional share of active bone marrow, comparing donor marrow vs. the recipient. When the marrow graft works, all my white cells will be produced by donor marrow. The tests check three sub-types of cells. The first two categories are supposed to be over 60%, and were near 90% in both studies. T-cells are the ones that kill cancer and cause Graft vs. Host Disease. During my first study, only 30% of my T-cells were from donor marrow. The number wasn’t horrifically low, but it wasn’t as high as the doctors would like. Three weeks later, the number was up to 50%, which is good. It’s high enough to indicate that the graft is “taking,” not being rejected, but too low for a bad case of Graft vs. Host. The T-cell number should increase as the drugs get tapered off.

I’ve had a couple of allergy attacks in the last few weeks. The cause is unclear, although we are entering high pollen season. None have been nearly as bad as the protein-bar-induced episodes I had earlier. When the transplant stuff is done, I’ll get checked for allergies - it would  be impossible to interpret the test results at this stage. Treating the underlying allergies isn’t possible yet either.

I’ve had a couple of fun visitors lately, most recently my mom. She brought my cat Anastasia with her. We’ve been together, other than hospital stays, my autologous transplant last year, and vacations, continuously for 5 years. Most of you know that I am an animal lover, and that I’m extremely attached to my cats - I’ve missed them terribly. She helped keep me sane while the scan was pending.