I don’t know if I posted my monthly Myeloma Markers on here from last week but they pretty much stayed where they were.
M Spike is now ZERO for the second straight month indicating no Myeloma in the blood or the urine. This is GREAT news just as it was last month. The one glitch in the numbers is that while my Kappa protein is normal level and my Lambda protein is normal level – the RATIO between the two (they call this the kappa/lambda ratio) is ABOVE NORMAL LEVEL. From what I understand, this indicates there is active Myeloma in my body. These are called “light chain” proteins.
I asked Dr. J about this and his email back to me was this:
1) Great News
2) Ratio not important; light chain values great
OK – so all is well, right? MAYBE? Read on …
Here is why I DON’T like support groups:
When I was about two cycles into this in I was featured on a great website called MM For Dummies:
I met a guy through the comment section named Stan. Stan is also a patient of Dr. J and we met in person at Mt. Sinai and discussed our treatments, our fears and our lives. Stan and I have developed a pretty neat friendship. Stan and I also managed to get added to a Facebook support group as well.
In this support group Stan recently posted that he achieved an SCR. (Stringent Complete Remission) and I was quite excited by this. I commented – “great job” and gave him an update on me – Zero M Spike 2 consecutive months, normal light chains but ratio high, etc.
We got into a conversation about the meaning and I said Dr. J says not to worry – all is well.
At this point one of the self appointed amateur doctors that you find in EVERY support group decides that he is going to play oncologist and tell me how IMPORTANT the kappa/lambda ratio is and that is what is looked at in Myeloma – blah, blah, blah.
Now I am freaking out. This guy has a pretty widely read blog in the MM community. He seems to know what he is talking about. I have read his blog and he has done his homework. I emailed Dr. J:
Everything I have read says that ratio is very important. It jumped quite a bit. Not in normal range. Is this an indication of a possible relapse? I know Kappa is normal but it is as high as it was in February. Does the high ratio mean Myeloma is more active than before?
No! Not to worry! (again with the exclamation points – his, not mine)
SO – What am I getting at here? The reason I don’t attend support groups is that you can’t control the environment. Too often they become bitchy chat rooms full of know-it-alls and negativity coordinators. I choose to spend my time with supporters who are positive and happy. People that have chosen to confront their disease and live their lives as if …as if they will live for a long time. Even if a long time is a week, a month or a year. People who choose to MAKE THE MOST of it all.
The SILVER LINING here is that environment exists for me. It exists with family, friends, co-workers and clients. It exists on Twitter. It even exists in that very Facebook group. There are plenty of positive people in that group that share positive stories, that inspire others and are legitimately looking to be lifted up. To ALL of you – I support you. To the OTHERS – leave us alone!
Oh … and to the amateur oncologists out there: Shut the fuck up … please … for all of our sake.
I am off to Hackensack to see the transplant doctor this morning. Feeling great. Feeling #bradstrong. it is ANOTHER great day to fight Cancer!