Melisa and I heard the words "stable disease" at our last visit to MD Anderson. Her CA 19-9 marker is within normal range, and while the tumor hasn't shrunk, we're stable. And that's amazing news.
It hard to explain, but the visit to review our last scans was anti-climactic in some ways for both of us. Our oncologist was hugging Melisa and high-fiving us - and believe me we're relieved to have continued good news. But we also were served a dose of reality in that this "is" the goal for us. Stable maintenance. We can't remove the tumor right now due to local advancement and involvement of the arteries and veins within the tumor - so we have limited options. We move to radiation and oral chemo, which would take us out of our trial, or we continue with a slightly lower dose of chemo for another round and drop back to every two weeks visits versus three-on and one-off. We are choosing to stay in the trial and keep the higher scan/MRI rate and other benefits it offers us, and drop back to two week visits to lighten the load on Melisa's physical health. It feels good to deal with the devils we know of IV chemo right now vs. the unknowns of radiation and oral chemo with all of it's potentially new side effects (like mouth sores, etc.)
Melisa's Most Recent Update
On October 5th, Melisa posted to Facebook:
"This new lower amount of chemo every other week has been like a vacation in comparison to what I was getting. My nails seemed to have stopped detaching from my nail beds. No more sharp nerve pain in my legs. No fever. My hair is trying to grow back. I refer to my new hair style as the “chia pet” look. New side effects, my toes are very sensitive. Some back and neck pain. All things I can deal with. For the most part I seriously forget I am sick, I feel great. So I keep asking my Doctor questions and I know she can’t answer. Every patient’s situation is very unique. She can’t tell me if I will be on chemo the rest of my life (though it seems like that is a possibility). What does it mean to survive this kind of cancer? I bought myself 3 more years of life? 15 years?
Any other disease I would spend my time researching. I can’t with cancer. So many dark and depressing rabbit holes to fall into.
Doctors in the US can not discuss alternative cancer treatments that are not part of the “standard of care” or they risk losing their medical license. She can only talk about chemo, radiation, surgery etc. So I have spent a lot of time reading & watching videos of cancer patients who have survived and how they did it. So I am going to stop worrying about things I can’t control and focus on things I can control.
What I know from my research that doctors can’t tell me:
Happy people live longer.
Positive emotions are like rocket fuel for the immune system
Passive patients die. Noisy ones survive.
Laughter is the best medicine
Hope is real. Healing is possible.
Diet can improve cancer survival rates
Remedies from chemicals will never stand in favorable comparison with products of nature.
Where the mind goes, the body will follow.
He who has a “why” to live can bear almost any “how”.
The body listens to what the mind is saying.
As far as I am concerned, I have everything I need to survive. I love where I live. I have the cleanest air & I am surrounded by beautiful nature. I have animals to hug on and make me laugh. I have AMAZING family & friends that support me constantly. I am very thankful to all of you for your love & support. It truly is THE BEST MEDICINE .
"Ain’t NOTHING GONNA BREAK MY STRIDE. Nobody gonna slow me down, oh no. I got to keep on moving...""
"Living" with Cancer
When we got the diagnosis we immediately said, "We're going to fight this" which comes with the implication that there's a "win" out there on the timeline. A place we can claim victory, stop, rest, and reflect on the challenge we've overcome. We aimed for a finish line we couldn't see, knowing it was out there.
Everyone we know sent "You got this" cups, "Fuck Cancer" bracelets, and t-shirts like "Currently BEATING Cancer". For seven months we dug in, we clinched our jaws, set our focus, and leaned in as Melisa "fought" pancreatic cancer, chemo, and everything that comes with this so far. But like any staged experience we see things differently as we progress. While we imagined a finish line that was suddenly different for us - the truth is that it's not. We all are running towards the same finish line whether we choose to acknowledge it or not.
The words "Journey before destination" come to mind. If we have to run but don't know how long we have to run, how will we run our race? Melisa and I have the same finish line ahead of us as we've always had, but versus rarely thinking of it we are constantly reminded that its out there - somewhere. That fact most certainly effects our journey, and I'm less interested in the finish line. Why focus on the last page of a book, or the end of a journey?
Last week, I took off my "fuck cancer" bracelet after a conversation with Melisa over coffee, where it hit home that the bracelet reflects an anger and negativity I simply no longer have.
Maybe the anger comes back at some point, who knows. For now, we are more accepting that we were not "chosen" or "beset" or "punished" with this disease - it simply happened. Why us and not someone else? Why are we stable when others have lost the battle? There's no answers. Melisa said it best in her post above - "I am going to stop worrying about things I can’t control and focus on things I can control."
First step, stop broadcasting the "fuck cancer" negative and angry response. As Melisa's study tells us above - "where the mind goes, the body will follow". Melisa and I believe in mindfulness as part of our core beliefs, but like any humans, we find it hard to practice sometimes. I have definitely fallen off a bit through all of this, with my mind living anywhere but "here and now" as I've worried about the futures that may or may not come to us. My body followed, and now I need to refocus on health.
In many ways my wonderful, 'wonder woman' wife is leading the way right now with posts like the one above - showing a mindful approach to her next steps. With this post, I've decided to take a deep breath, focus on a positive reset, and then I'll just continue to follow her lead. It's an a-ha moment for me. I've always encouraged her, so why should I be surprised to see her 'doing' it, focusing on being her best self? It's a great example, and I'm "in". Let's see where she takes us next...