Hope is …

Lets face it. Last year has not been the most encouraging in terms of the cancer on my scans. Every scan has been worse than the one before. I was diagnosed with metastatic breast cancer in Feb on 2016 on a Breast MRI which caught the edge of the liver and it showed spots. These spots thus changed my life and my universe. I was then moved to the incurable category and labeled as the one that needed ” quality of life” discussions. I was treated first with Ibrance that kept me some what stable for 8 months or so. Then I grew metastasis in my skull bone. A daunting neurosurgery later, I was signed up for chemotherapy with THP. My tumor had changed its receptor type and was outwitting the drugs and treatment. The five cycles of THP failed and mets had progressed further. Then I was started on Xeloda, an oral chemotherapy agent. Two and half cycles of that and then scans showed even more progression. So here I am with a year’s worth of progression on my scans. I still look good. Good enough to do a shoot for a beauty company. Good enough to pass as “normal”. But I know that it this tumor doesn’t retreat, I will start looking sickly and cancerous. That is bound to happen some day but my hope is “some day” is really far off. It is wishful thinking having a disease that given an average of 3 years to the sufferers. However all my life my path has been somewhat non traditional so this couldn’t possibly be any different.

My medical oncologist was apologetic for my scans but I told him, I need to make this worth all the medical experience he had. He needs a good challenge. He is very accomplished in the field of Breast Oncology and smiled at my wise crack at him.

I am certainly not overjoyed with these awful reports and the fear is real. The fear of imminent suffering, potential liver failure and all the medical complications that I can rattle off based on my training. The first procedure I witnessed as a medical student was an ascites tap. The one where you stick a giant needle in someone’s belly to relieve the tension and drain the accumulated fluid. A common event for those who have failing livers. I know all about the symptoms, the loss of appetite, the weight loss and the jaundice. Another set of cancer cells sits on my skull so saying cancer is perpetually on my mind would not be an over stretch. I have a titanium plate in my skull already and as I joke about it, it makes me less biodegradable.

I literally live with cancer and my family. An unwelcome guest in our home. Someone who goes around messing things up, schedules, parties, activities, meals. Not leaving either. We accommodate. We put up. We endure. Me, my kids, my husband, my friends.

We are getting used to this on going intrusion and loss of control. We are getting good at winging it, of letting go or being ok with homework being a late. For the first time yesterday, I got the days wrong and missed my daughter’s conference at school. I have the cancer card but don’t use it. Its like one of those magazine subscriptions that someone gets you, and it arrives promptly every month. But you never really read it. That is my cancer card. I have too much independence yet to hide behind it. But some day I will need it.

Things in my body are changing although they cannot be seen by someone who looks at me. Fatigue is a constant companion. I try hard to stay active. Xeloda was a kill joy and I could not walk much on it because of Hand Foot Syndrome. Now that I am no longer on it, I am hoping to get back to my walking. Life is changing too. Its a constant exercise in humility. Keeping up with change and being okay with it. So far I feel I am succeeding.

I remain hopeful in a very practical sort of way. I know what I have and what it means. But I define hope in my own way. For me hope is living each day with intention ( yeah I know cliché) and purpose. For me hope is getting up and getting dressed and knowing that my life means something to others. For me hope is still keeping up with my projects and art knowing I may never get time to excel in my craft as I would have wanted. For me hope is still being interested and caring about the politics of the country and the world. For me, hope is trying to effect a change I may not live long enough to see its impact. For me, hope is keeping up with my anti aging skin cream and waiting for wrinkles which I hope I never have. For me, hope is seeing my laugh lines as a sign of life well lived. For me, hope is the little post it note from my daughter that says I am the best mom. For me, hope is a hug from my son and a kiss from my husband, a call from a friend, a bouquet of flowers and a nice smelling soap. I am surrounded by hope that comes with every morning. Hope is a beautiful thing that accompanies my gruesome reality. But I am not losing it, no I am not. Hope, some day, will be a meaningful death in the comfort of my home with peace in my heart of a life well lived. Until then it remains warm in my coffee mug and in the keys of my lap top.

Here is to hope and good coffee!

 

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5 thoughts on “Hope is …

  1. Dear Uzma, your courage and hope is a beautiful gift. I pray that you and your family experience a miracle in this journey.

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