Well I had my CT scan last week and that was followed up by an appointment with Dr D'Souza on Thursday. I knew straight away there was a problem as he entered the room looking a little grim, unlike his usual smiling self.
He asked how I was, and I replied "excellent". He seemed surprised.
Apparently the CT revealed two slightly enlarged lymph nodes in my pelvic region. Not especially large at 8mm and 10mm, but large enough for the radiologist to make contact with him directly.
I said I wasn't too concerned just yet as I have not shown any signs of relapse, and other than the constant battle with prednisone side effects, I thought I was doing pretty good. I've had a couple of lymph nodes pop up in the past and subsequently fade away. He admitted that may well be the case this time too. However he seemed more negative than I'd have expected.
He suggested that in light of the fact that the nodes were too small to biopsy, that we wait another three months and perform another CT scan then. Based on that result he will either arrange for a biopsy to analise the tissue and confirm HL, or if they are smaller or gone, then ignore it.
Then came the really bad news.. the reason for the grim face. If I have relapsed he has absolutely no idea what he can do to treat me. Apparently because I'm on steroids long term and can only be weaned off over a reasonably long period of time, we can't use chemotherapy as my weakened immune system would mean I'd probably not survive any infection.
I can't be given an allogeneic stem cell transplant for the same reason and also the damaged area of my lungs would most likely be a site of disease re-activation in the future. Also if I developed BOOP/COP again we would not be able to treat it with steroids because that would switch off the lymphoma fighting aspect of a transplant (called graft vs lymphoma effect) where by the new immune system attacks the cancer. The result would also be fatal.
So here I am sitting in this small room, feeling great and he's telling me that the worlds about to end.
Oh.. but I might be OK.. just sit around stressing for the next three months, or until you feel really unwell and we shall take another look.
Needless to say my frame of mind has changed somewhat in the last few days. I'm unable to focus on much and all our plans for the future are in doubt, so it's hard to get excited about much.
What does make things even more stressful is that I have a very slight skin itch. It's nothing like the insane itch I get when my Hodgkins has definitely been active, so it may just be caused by the steroids or a high glucose level as a result of long term steroid use causing diabetes. It could also be the Hodgkins itch being suppressed by the prednisone too! So although I feel good, every now and then I get a little pin-prick tickle that reminds me that I may not be.
Ever the optimist, I'm sure I'll get through all this again like I have in the past. Heck I'm still here five years after first getting the bad news. Though I must say that I'm playing with a much smaller pack of cards than ever before. It'll be a challenge!
...Ron
