Day +127

Yesterday was one of those important days when I have to get a PET scan to check on the progress of my treatment. The day started out pretty normal with my usual clinic appointment. I felt the GVHD I've been experiencing hadn't really changed much, and I was feeling pretty good after the coughing and runny nose from the previous week. The doctor who saw me shared that the virus I had last week was adeno virus. She was surprised that I was feeling so well, because she said it knocks most people off of their feet. While I did feel less energy than normal, I was still pretty active over the last week. Must be good news that I felt reasonably well despite that virus.

The doctor also examined my mouth and skin for GVHD, and felt my mouth had improved over the last week. My mouth is feeling better, and its nice to have her opinion that it is visually improved as well. My skin is pretty splotchy on my upper body, especially on my neck. I don't feel the desire to itch that much, but its definitely noticeable. I'll have a biopsy on Monday with the dermatologist.

After my clinic appointment I went to the dentist to have an oral biopsy. I filled out a few quick surveys about my mouth, the dentist examined the GVHD in my mouth, and then took a snip from inside my cheek. The site of the biopsy bled for a bit while I bit down on some gauze. However, a day later I haven't even noticed where it was taken from. The dentist wanted me to pay particular attention to under my tongue while applying the ointment to treat the GVHD. Apparently the rest of my mouth doesn't look so bad.

Then came the PET scan which has become very commonplace. I was sitting with my mother before the scan, and counted 11 PETs that I've had since this whole process began almost two years ago. It was uneventful, and I went to the day hospital to wait for my doctors to report back on the results. My parents and I waited a while, and two of my doctors eventually came with a not so pleasant look on the lead doctor's face.

Don't get too worried. He didn't really have bad news, but was kind of upset that he hadn't been able to view the results of the scan before meeting with us. He had a hectic day with the usual outpatient clinic in the morning, as well as duties with his in-patient rotation as well. When he went to view the scan, the radiologist had already left for the day. He was able to tell us what the preliminary report had stated, but not what his own opinion was from the scan. The radiologist's report showed a small uptake in the chest. Its always disheartening to hear about any uptake on a PET scan, but the doctor was not too worried because my recent respiratory virus could have lead to an increase in activity in the lung. He also shared that the CT scan I had last week when I came in with the symptoms of the virus had not shown any growth in the tumor mass. He was pretty confident that this wasn't any cancerous growth, but he could not say that with certainty because of the uptake on the PET.

So the doctor called back today after viewing the PET scan himself. His opinion was that at worst...the tumor mass had stayed the same. Yesterday's scans showed three other spots that had increased activity, although their SUVs were very low. He didn't think these areas were cancerous, but he wanted to compare these spots to PET scans from back in 2008. He was unable to do that today because the files are too large to be kept readily available on computers.

So what does all of this mean?The plan for now is to continue to taper the immune suppressant drugs I am on. This decision is standard for the protocol. What the taper will do will allow my immune system to fight the remaining tumor cells a bit more effectively. The drawback to this is the potential for more Graft Versus Host Disease. If there was a clear decrease in cancer cells on the PET then the transplant team might have decided to keep my current levels of immune suppressant drugs the same. However, the doctors feel the increased graft versus tumor effect is worth risking a greater chance of GVHD.

If there had been clear growth of the cancerous cells, the doctors would have quickened the tapering process, exposing me to greater risk of GVHD complications while also giving my immune system the maximum ability to fight the cancer cells. So for now I am taking a lower dose of the immune suppressant drugs, and I'll have to be even more careful to monitor my GVHD. I'll have another PET scan in a month to see how things have progressed on this lower level of immune suppression.

All of this information can seem intense, but the bottom line is that I am still doing well. There is no regrowth, and while the progress isn't as quick as I would like, it is still being made. There is a constant need to remind myself that this is a long process and that the result we want will eventually come.

Some good news is that my doctor had no problems with my plans to visit Milwaukee for my brother Tim's graduation next month! That is very important to me, so I am happy for that. He is also supportive of me returning to work, and I anticipate that I'll be getting back to work at some point in May. Those are two very tangible events that I have to look forward to, which is a huge blessing. Today is Kate's birthday, so that is another reason to celebrate. She and I continue to get old, and we are both happy that I'll be healthy enough to celebrate tommorow.