Truth

Here's what I did wrong.

When this all started (I don't use the word "journey" anymore; rookie mistake. That word has connotations too beautiful for this terrible disease) I only showed the sides of myself that I thought people should see. People only saw the me that was strong, clear-headed, and optimistic.

But I'm an old woman now. (ha! and proud of it!) And I won't bullshit you any more. It's not fair to anyone reading this that needs to know the truth of this process, who may be going through it, too. I AM an optimist. I CAN be strong. But I have good days and bad days. And days that swing from one to the other hourly.

Some days I cry. I feel debilitating pain. I hobble, I limp. I feel sorry for myself. I mourn the loss of a normal life. I have days when I feel as if I am walking through molasses, days where the fatigue is so bad I struggle to lift my body from the couch. I sit, staring at nothing, tears welling in my eyes, wondering what kind of God would let me feel such love for a child, bring it into this world, want nothing but to watch him grow, and know that will be taken from me. The wrenching in my gut, wondering how I will ever say good bye. I have days where I feel useless and scarred and ugly.

Some days, I feel a breeze on my face and smile. I walk into my appointments laughing and ready for war. I thank my lucky stars to have gotten to live at all, to have slept among the redwoods, to have explored Cambridge, England, to have seen Mickey Hart drum into my soul in the flat nowhere in Idaho. I feel my heart fill and run over with love as my son laughs with squinty eyes and hugs my legs. I smile. I look around me at my amazing and supportive friends and family and feel that I have had an incredible life, and that I have a lot of life left to live. I feel grateful. I feel content.

Here is the important thing I've learned to do with all of this.

I allow myself to feel it all.

I allow myself feel every fabulous high and every dark low and I remind myself that everything I feel and think is valid. That I am grieving a loss. But also that it is unproductive to label an emotion as good or bad. They just are. And once I feel everything I need to feel, I go to sleep knowing that when I wake up, it will be a new day to try again, and I don't hold anything against myself. Every day I do my best, and every day, my best is going to be different.

And then I put one foot in front of the other. I fold another load of laundry, I play Mr. Potato Head with my son, and take it one day at a time.

So this is living with cancer. I promise you honesty.

1 year post-transplant scan

...let's get down to the nitty gritty, shall we?

My one-year scan seemed to show progression of disease, and relapse was confirmed yesterday by a lymph node biopsy.

So, boom, there it is. I never saw the transplant as a cure, but I certainly had hoped that I could have gotten a bit (all right, a lot) more time before another relapse rolled around. The disease is pretty widespread, but the tumors are small, especially compared to previous relapses. My bloodwork is normal and I haven't exhibited any signs of relapse. I like to think that the disease isn't very advanced because my new immune system is still trying it's damnedest to keep these tumors in check, but just couldn't handle it completely. Big job, little white blood cells, big job. You put up a damn good fight.

I have a couple of options. Option A is Brentuximab (an immunotherapy, not as brutal as regular ol' chemo) again, which I start on Thursday. We are trying a second round of this one in the hopes that my new "more awesome but not quite awesome enough" immune system will respond more favorably this time. Then the next step(s) depend on if we get these pesky tumors under control with this therapy or not. I'm honestly just ready to do something, anything to keep fighting this. I will make whatever hard decisions I need to make later. Right now, I'm trying to keep myself together. When a piece of me falls off, Jazz glues it back on with a kiss. He is both the reason I cry and the thing that soothes my soul. He picks me flowers, puts them behind my ears, strokes my cheek, and he tells me it will be okay.

In a way, I believe him.