Wednesday, June 28, 2017

Permission to Dream

 Last year, after my diagnosis, I had to rethink my perfect life. Before this I had many dreams for what I thought would be a part of my long and rich human existence; some unformed, some more specific and clear, some dearly held, others unattended to. My biggest struggle, when facing my diagnosis and prognosis, did not involve the challenges of the potentially grueling treatments and symptoms that lie ahead. It was that I was only 31 years old and that so many of these dreams had as yet gone, and would most likely go, unrealized. Overcoming this struggle meant rethinking my dreams. That meant letting go of some, repackaging others, and in some cases, storing away the bits and pieces of material … just in case. My new dreams mostly consisted of those that could happen in the next few months or in the next year. Those I didn’t think needed complete banishment were to be lovingly and painfully packed away and pushed from conscious thought, I had decided, until my circumstances changed.

Now, as my second ever PET scan looms nearer I find myself casting a curious, sidelong glance at the closed doors of that closet of unspoken, unfulfilled dreams. Could it be? Is it possible that my circumstances will change significantly enough that I can believe in those dreams again? Or will I look back on these moments and consider myself foolish and naïve for dreaming I could dream them again.

The one marked “career” has already made its escape from the forgotten closet. To have this dream dusted off only to be crushed by an untimely relapse seemed less emotionally taxing than for some of the others.  At first tentative, and now strengthened by time and clear scans, I have made progress and gotten a few critical people on board with me creating a year-long post-doctoral clinical fellowship at a cancer center in Nashville. We are strategizing together to get the remaining parties on board but are hopeful that it will happen soon. A career founded on shaping and participating in the support and care of the many others facing this most significant health and life battle is something I am well prepared to allow to take shape. An old dream, reformatted. 

And then there’s that one dream. The one purposely packed on the bottom of the stack, weighted down by many others so I won’t think too lightly about rebrandishing it. This one simply has “family” scrawled on it. The contents are rather amorphous and have changed a lot over the past year, even without allowing myself to fully discuss or consider them. Many have told me to let this one go. After all, I already have a wonderful husband and a son that makes my heart sick with his sweetness. Several oncologists have told me that getting pregnant again could be the catalyst for a virulent and untreatable relapse which would at best put me in the same position I was in last year. However, it is the other shapes this could take that really intrigue me. Things like adoption, fostering or even “gestational surrogacy”—although this last one carries with it a lot of controversy. Gestational surrogacy is the fascinating science of another woman carrying our own genetic child. What a complex situation but what a gift that would be. And it is about this moment, just when I start to imagine what that would be like, that I remember my reality. Most often, I remember that it might mean leaving my grieving husband with not only one but two children to care for. Then I shake the thoughts from my head and file the dream back in the closet and close the doors.

My PET scan is in one month. If it is clear, we will discuss going off of immunotherapy and switch to “watchful waiting.” Scans every three months. And if so – when, then, am I allowed to dream? Will I ever feel that I have the right? How long until I know I will “make it?” Will it always feel foolish to dream – my life forevermore constrained and tied up in three month increments? A better question might be – what is stopping me from dreaming? Dreaming and planning make up some of the most joyful parts of life. As I have written previously, plans are a luxury. Dreams, then, are the whipped cream on top of that luxury. Or perhaps more appropriately, they are the vast and endless waters that plans are plucked from. But really, the only one that is stopping me from dreaming – is me. Sometimes, we need to be the ones to grant ourselves the permission to dream.

Saturday, June 17, 2017

Cheers to Checkpoint Inhibitors

Today marks one year since I began immunotherapy and was given a chance at a longer life.
In the days leading up to this I was navigating the murky waters of some pretty scary news. The biopsy that I pushed for had come back positive for melanoma. The rigorous biochemo therapy treatment that I had just completed had not prevented a re-occurrence and I was officially at an advanced stage of cancer. I had returned to MDACC in Houston to discuss the next plan and learned that not only was it back but the tumor was dangerously encasing an main artery in my pelvis and therefore inoperable. Also, the MRI showed a few more tumor deposits nearby. My list of treatment options instantly got a whole lot shorter and I was essentially sent back to Tennessee with fingers crossed that systemic immunotherapy drugs would buy me a little more time with my son.

The type of immunotherapy I started, two checkpoint inhibitors (Opdivo & Yervoy), were newly approved by the FDA, were expensive and were not well understood and - most importantly - were not likely to work! Though these drugs work on some people with mucosal melanoma to shrink or stop tumors and spread, there are many more for whom they don’t, or at least not for very long. For me- though it has not been without some pretty scary bumps in the road - in all that time I haven’t had any new metastases or spread. It almost doesn’t sound correct to say that out loud because it hasn’t been a straight path. There was a severe immune reaction caused early on by the treatment, requiring a reversal of my heightened immune state with high dose steroids and lots of worry when the tumor grew again, and again – even when I started one of the drugs again. However, we were extremely fortunate that, not only had the drugs stopped spread for that time, but they also caused the tumor to become operable. And we operated - leaving me currently “NED” (no evidence of disease). The hope is that I will have a clear PET scan next month and try a few months without any treatment at all. And then a few more. 

No one dares utter a word like “cure” around someone with mucosal melanoma because this isn’t a cancer that is eradicated and just never returns. But each new day without spread is a small triumph of time. Time is the thing. We would give anything to manipulate it or to have more of it. To gift time is to do the impossible. So – cheers to the checkpoint inhibitors, because that is just what they have done for me.