My husband’s mid-month MRI didn’t bring good news. As if the December 20th bad news that the cancer had spread from his liver to the abdominal lining and rib bone wasn’t bad enough, we found out on January 22nd that the cancer had become even more aggressive. There are now more tumors in the liver, the large conglomerate mass in his abdomen has become even larger, there is a new large mass in the abdomen, several lymph nodes are involved, there’s the tumor on the rib bone, and now there are also several small tumors on the spine. This wasn’t the news we wanted. This wasn’t the news we expected. This isn’t the news anyone wants to hear ever.
And then there was the bilirubin issue. It had risen to an all-time high of 6.4 right around the time of that mid-month MRI; 1.2 or lower is normal. They’d told us there might be blocked bile ducts, we had a failed ultrasound because there were too many tumors to visualize the ducts, then came that MRI. The radiologist said there weren’t any blocked bile ducts, but second and third opinions from surgeons suggested there were constrictions in the bile ducts and surgery should be scheduled ASAP so we have one last CHANCE at getting this bilirubin down to 1.5 or lower so we can have one last CHANCE at going on the clinical trial in Nashville.
The morning of December 20, 2019, we both woke up thinking the cancer was still confined to the liver and all the labs were acceptable for starting a new clinical trial on January 2, 2020. We woke this morning, the morning of January 31, 2020, and my husband is now on full-time short-term disability, the cancer has spread all over his body, and we can’t start any trial or treatment unless his bilirubin can get from a current 4.7 to 1.5 or lower.
“There’s a CHANCE we could get on a trial.”
“There’s also a CHANCE this could go downhill fast.”
We chose to take a CHANCE. We chose to have surgery to place stents in my husband’s bile ducts. We chose to do it on Friday instead of waiting until the following Wednesday so we’d have a better CHANCE at getting the bilirubin down sooner rather than later, a CHANCE to get on the clinical trial sooner rather than later, a CHANCE to get treatment for the tumors sooner rather than letting them grow more.
“Do you think we should meet with palliative care?”
I chose to take a CHANCE, to ask the question that no doctor, no nurse practitioner, no nurse, no medical assistant, no social worker, no NOBODY had EVER asked us in 19 plus months of dealing with this incredibly rare form of cancer called metastatic uveal melanoma. I chose to take a CHANCE on behalf of my husband, on behalf of myself, on behalf of our children and our families. I chose to take a CHANCE when I asked this question because for four months, I KNEW in the depths of my gut that nobody was properly managing the symptoms and side effects my husband was experiencing from cancer and cancer treatment. And that is NO way to live, NO way to live your life.
“I’ll send a referral, but I don’t know how quickly they can get you in.”
It took eight days to get into the palliative care practitioner. She was beautiful and lovely, with glowing, loving eyes that understood all the holes in our care that hadn’t been addressed for months. She took time to hear about the pain and the nausea, about not being able to eat and sleep, about the pressure in the abdomen, about the worries associated with stage 4 cancer. She was smart and quick, with words that came swift and easy, with fingers that flew across the calculator as she tried to determine which patch dose would best alleviate my husband’s pain while we continue to navigate this bilirubin issue, while we wait for another CHANCE at treatment. Despite common beliefs, palliative care isn’t about dying, it’s about trying to LIVE better. It’s a CHANCE at living better, a CHANCE to live a higher quality of life than you’ve been.
I told my husband right there, right then and there in the palliative care room that THIS is the kind of medical work I could do. THIS is the kind of care I’d want to offer people if I was in medicine. In fact, THIS is the ONLY kind of work I’d want to do in medicine. Caring for people and helping people live better. THIS is holy and good work, indeed.
We all have a CHANCE. One CHANCE at life. ONE CHANCE, friends. That’s it.
Whether we live well, or whether we live in pain and purposelessness, that’s up to us.
Live well every day.
Take a chance now. Now is the only time to do whatever it is you’re supposed to do. Now is the only time to do what you WANT to do. Now is the only time to do what you NEED to do. Now is the time.
Live well every single day, even if all feels lost.
This is your moment. This is your time to shine. This is your time to break through and see that you have significance. This is your time to see that your life is a story, and your book isn’t finished yet, friend.
Live well every single blessed day, even when you’re exhausted.
Take a CHANCE at sitting and doing absolutely nothing for a moment. Put your feet up. Listen to some cello, stare out at the rain or snow. Wallow in the pain. Be sad. Just cry. Do whatever you need to do to cry. Lament all the things gone wrong. This is your CHANCE.
Live well every joyous day, because this is your LIFE. This is your CHANCE.
Love your parents. Love your kids. Love yourself. Take a look at who you are and be your very best self. Take a look at your parents, your kids, your friends, your loved ones and every blessed folk you pass by, and say YES, this is our DAY to love and live and take a CHANCE on living our very best life. These people are amazing. I am amazing. I can live and I am here. I am living life. I am alive.
God bless us, we are alive. Today we are alive.
Let us live.
Let us take a CHANCE.