It's not often that I don't feel incredibly satisfied when I'm right about something. There is a lot of pleasure that can be taken in knowing that you listened to your intuition and it was right. But in this case, I would have been perfectly content and pleasantly surprised to be in the wrong.
It turns out that as my doctors and I suspected, the Hodgkin's is already growing back since I finished up the GND chemotherapy and showed such a great response on that last scan. Apparently a lot happened in my chest over just the last month. It's the growing cancer that was the cause of the incessant fevers, night sweats, chest fulness and overall crappiness. I was not at all surprised. In fact, I laid there, arms overhead and legs strapped down for 25 minutes as the PET Scan machine whirred and I willed for one of two things to happen.
I spoke in my head over and over to whomever might have some control in all of this:
"Please let this scan be completely clear. Or, if it is not, then please let the cancer be prominent enough, just enough, that it will appear in the picture so that we can deal with it."
I know that scans are not advanced enough to pick up minute cancer cells and there is always activity at work first before it will show up as metabolic activity. We waited outside on a bench while Dr. Sauter pulled up the scan results to view immediately.
A very long hour later we got the call. It had already been a long day of lots of travel, rides from our very generous friend Ryan, bag drop-offs at Craig's very generous aunt and uncle, nothing to eat but a bagel and a body full of radioactive dye.
Craig and I listened with the phone on speaker as Dr. Sauter told us, eloquently, that he would not put me through the transplant with this kind of cancer activity because it would not work. Basically we don't want to waste this opportunity. The allo transplant is really a one-shot deal and we want to be sure that the circumstances in which I enter it are absolutely ideal. Right now, that's just not the case and I am convinced that the fact that these symptoms presented just at the right time and that I have doctors that take me seriously and are watching my case so intently means that I'm meant to get through this. It's a blessing in disguise. I need more time to get into remission and more time to get strong so that I can enter this major procedure poised for combat.
This is okay. I'm not angry at all. Of course I'm frustrated and hate to think of dragging this out further, but I'm more relieved than anything. I had this awful fear that the cancer would be brewing just low enough below the surface that it couldn't be detected but would be there just the same and would put a big damper on the success of this transplant. In fact, I knew it was there as much as I tried to convince myself otherwise. Dr. Sauter told me that though it is obviously disappointing and frustrating, this is not a step back it's just ... a step to the side.
This side step involves getting onto another chemotherapy drug through a phase II clinical trial being offered only at Sloan-Kettering. The drug, Bendamustine, is not yet approved for use against Hodgkin's Disease so I would not be able to obtain it anywhere else. However, it is the drug that shows the most promise for people who have refractory Hodgkin's Disease that has come back after a stem cell transplant and don't have other treatment options.
It's not a new drug. It was actually founded in Germany in the 1960s and was shelved but has recently been brought back into use and proven very effective in breast cancer, LLS, non-hodgkin's and others.
I am extremely fortunate that Sloan-Kettering is hosting this trial as the criteria seems to have been built around me. After we learned all the news and that my hospital admission was cancelled, we stayed at Craig's aunt and uncle's in Larchmont and enjoyed some wonderful, distracting conversation that kept us sane and comfortable. They then played Manhattan chauffeur for us all day Thursday which we could not be more thankful for.
Dr. Sauter paired me back up with Dr. Alison Moskowitz, a lymphoma specialist whom I had actually met months back when I was visiting Sloan for a second opinion. She is the one administering the study and she made room for me in her Thursday schedule to further assess my eligibility and explain how it will all work.
It was a lot to take but we left very hopeful. I am patient number 35 to be going through this. There are only 37 slots before the study closes so again, I feel very lucky to be able to get on it. About 5 people have gone onto an allo transplant after this drug regimen. So I'll be the sixth in the country, world possibly? Maybe my case will go in the "Book of Medical Wonders" or something. The elite minority group that I now belong to continues to baffle me ... when and how did this happen?
I'll begin the treatment next Thursday and will need to come the day before for a PET Scan and bone marrow aspiration dictated by the study protocol. In the meantime, Dr. Moskowitz, now my primary caregiver, put me on a course of Prednisone steroid which will slow the Hodgkin's growth, lessen the fevers and the chest inflammation and aches. It seems to already be working.
The difficult part of the Bendamustine regimen will be how protracted it is. It's two days in a row of infusions then four weeks off for recovery in between (treatment is once every 28 days). A PET Scan will be checked after two of those cycles. That means that in even a perfect world, I won't be starting the transplant process for another 2 1/2 months, though we'll be pulling the trigger on that as soon as absolutely possible. My sister's Neupogen shots will be taking up space in my parent's fridge until then.
Oh and another bonus? It is likely that I now will do targeted radiation as part of the lead-in transplant process since this sternum area has been a source of contention on all of my scans. The disease has now returned in just this one area that we can really focus on zapping. That's still being discussed among the transplant team ... . I realize it will leave me with many more side effects, but I'm certainly willing to do it if it means it will further annihilate the cancer.
So this means I get to enjoy more of the foliage, make a Jack-o-Lantern and hopefully get to go to our 10-year high school reunion and have Thanksgiving at home. Christmas? Well that's going to be another story ... . I'm happy that I get some time to get more strength built up and more time to work on getting my head in the right place. Primarily I'm grasping desperately for patience and building things to focus on during this time that we let the chemo do it's job.
There's a big correlation between the noun "patient" and the adjective "patient." To survive as the noun you've really got to aspire to be the definition of the adjective.
Beautiful song by one of my favorite artists. It seems to sum up much of what I've been feeling as this all set in: