Monday, March 17, 2014

A glimmer of hope? My myeloma update

I often write about the side effects from medications. I am currently on maintenance therapy, which we call VDT pace: Velcade once week intravenously (I get this through my port), Dexamethasone (20 mg once a week), and Thalidomide (daily). One of those side effects is fatigue. Typically, the fatigue hits me two or three days after I take Dex and will last one or two days. Except some weeks I skip fatigue entirely and other weeks I'm exhausted the whole week. And by fatigue, it's not the kind of tired that you sleep off. It is mind numbing exhaustion where there is no reprieve.

Last week, I skipped it. I felt energetic all week. In fact, I had a hard time sleeping at all. I just didn't need rest.

But the best thing EVER? On Friday, I met with my new oncologist at Huntsman Cancer Institute. His name is Dr A and I love him. I am in full remission, everything is stable, and all looks great. I hesitate even writing this because I don't want to jinx myself and I certainly don't want to come across as gloating. Because there is no gloating whatsoever when it comes with cancer. That said, I take every bit of good news as good news. I don't second guess it or overthink it. I'm just happy and I celebrate. My last oncologist, Dr K, said that I might stay on maintenance therapy indefinitely. Sigh. Really? Ugh! I will do whatever it takes so if I must, then I will. But it's just disheartening to think that I will feel like this forever. But Dr A said that's not his plan for me at all. Two years maximum for me, which means that I would be done in October if all goes well. Or even sooner. Ok, just typing this, I have to take a minute to...


I'll calm down now. October is still many months away. But just the thought of stopping all of these meds and side effects is joyous like you can't fathom unless you've been through this. Oh.My.Gosh!!!!! Maybe I can be done sooner? Dr A actually said that we could do another bone marrow biopsy now (OUCH!!!) and maybe end sooner. But I declined. I feel like I'm running a marathon and there are just a few miles left and why would I stop now? I am going to finish this race! Let's stay aggressive with me. I can be strong. I can do this yes I can.

After maintenance, I know I'll need time to recover and get strong so it won't be "hey, I'm done, back to normal." What is my new normal? What does it look like? What does it feel like? It's been over two years since I've started this myeloma journey and I can't remember really what life was like before all this. I mean, everything is so different. A new family structure, boyfriend, city, home... nothing is the same. Better, but weird when I think about it.

I have met many new myeloma warriors over the past few days thanks to my article that ran in the Chicago Tribune (Fix Obamacare, don't repeal it) on Friday. Nothing that happens in my life from here going forward will ever be without myeloma in it. I will continue my passion of trying to help others navigate this disease and find new treatments and, best yet, cures. We are close, so close.