Looks like it's back

It's been a while since I updated. The latest is that the cancer seems to have returned. My 3-month post-SCT scans showed several nodes in my abdomen, and my onc assured me they were probably just inflammation. Then the 6-month scans showed that they'd doubled in size and increased in number and lit up the PET with the same degree of intensity. The area they really want to get to is surrounded by organs, so my oncologist wanted to spare me an invasive and painful surgical biopsy if possible, so we took a shot at a needle biopsy, notorious for yielding inconclusive results for Hodgkins Disease. Sure enough, the tissue they got after 9 "passes" (attempts -- the needle had to go through organs to get to the node and the surgeon really did hit the node -- I saw it on the CT scan in the doc's office) was what they call "nondiagnostic," meaning it couldn't yield a diagnosis either way. So I'm moving forward with the surgical biopsy, and I'll meet with the surgeon this Friday. He's going to see if he can perform it laparascopically, with a laser and a scalpel. If not, he'll go through my back, cutting a foot-long incision through back muscle and then he'll move my organs to get to one of the nodes to cut it out. I'd be in the hospital for 5-6 days and then recovery would be 4-6 weeks. We have to do it, though, to either confirm or deny the presence of the Hodge. If it is the Hodgkins, then my options are extremely limited and a cure is pretty much out of the question. I'd be looking at palliative care, just trying to keep the cancer's progression and side effects under control for as long as possible. I think I'd be looking at somewhere from one to four years.

Yesterday, Lorraine and I met with my onc to talk about where we are with things and also his recommended treatment plan if it is the hodge back again.

He showed us the scans on the computer and explained the particulars. I have 5 nodes in my abdomen, lots of spleen activity and what looks like the beginnings of liver involvement. There's one tiny node in my chest with minor uptake.

Bottom line, he's an optimist and still thinks there's an outside chance that it's inflammation, but finds it "highly unlikely" that it's not HD. If the surgical biopsy comes back positive for HD, I'll heal for a couple of weeks and then head right into chemo: Gemzar and Navelbine, delivered every 2 weeks for as long as the combo works. So, in the rosiest picture, the rest of my life I guess. We talked about an allo BMT but I have a significantly smaller chance of its curing me than my dying of GVHD-related illness. I knew already that it would be a real long shot --I have no contact with my one full-blooded sibling, who only has a 25% chance of being a match anyway. I just don't think it's worth it, and at this point I'm not interested in pursuing an allo transplant because it's got such a tiny chance of doing me any good. That said, my onc is going to be watching my response to the Gemzar/Navelbine, because if I'm nice and responsive, he'll find the allo prospect much more encouraging. Regardless, he's already begun the search for a 10/10 match in the donor database. If he comes up with a match, and if I respond well to the chemo, we'll revisit the conversation about an allo. At this point, however, I'm more motivated by maintaining some sort of quality of life for less time than chasing after some elusive cure at the expense of my daily well-being. And Lorraine and I are talking about how far I'm willing to let myself deteriorate before I pull my own plug, because I'm not willing to put either of us through the misery of a slow tumble down a slippery slope. When things start to head south I'm going to call it quits with a sense of purpose and dignity.

Obviously all of this is just really hard, and I'm trying to balance my compulsion to put a shiny, brave face on with my desire to just look up into the sky and weep. On a more positive note, I said to Lorraine in that meeting with my doctor that there is a gift of sorts in this; so many people die suddenly, with their lives yanked unexpectedly. Getting advance notice allows you time to say the things you wanted to say and do some of the things you wanted to do before you go, so you're given the gift of time even as you're losing it. You know?

I'm going to start to see a therapist weekly beginning next week, and I'm working on Lorraine to convince her to do the same. I want us both to have our own therapists for 1-on-1, and then to do some sessions together also. I didn't see anyone during ABVD or when I relapsed and had my transplant, but now that I'm facing my own death it might be time to get some support.

In other news, I adore my oncologist, and he seems sincerely upset by this unexpected turn of events. Again, I fall into the category of "Huh??? I didn't see that one coming with her." I always respond beautifully to treatment, but then it's short-lived. The first time I got 14 months out of it since I was in remission after 3 cycles of ABVD, then when it came back I got a nice remission going into the SCT, and now it seems it must have come back immediately after the transplant.

Lorraine and I keep protecting one another from our grief with brave faces and (mostly) hidden tears, but I think we both have this sort of "freshly punched" look. We're trying to hold onto the tiny glimmer of hope that the biopsy and "generalized inflammation" explanation offer, but we are doing the requisite emotional preparation that accompanies this kind of diagnosis.

I'll update again when I have more.