Suzanne is a cancer patient I have written about before and if she continues to stump her cancer, I'll hopefully be able to write about her for a long time to come.
She's done it again, or maybe I should say, her doctors and she have done it again.
I can't count how many clinical trials Suzanne has been on, but I can tell you this, her body, her immune system, maybe even her philosophy on having cancer, has managed to push back time and again and has sent those cancer cells running for cover. Where they go, I have no idea but I can tell you this, her email the other night was simple and to the point: "I am responding to the trial drug! Everything is stable or shrinking."
I call her the cancer warrior woman.
Her doctors are learning from her. She is what clinical trials are all about. Suzanne is paying it forward in ways she'll never even know.
Way to go cancer warrior woman.
I met a young woman today who reminded me how lucky we are to have "angels in waiting" in cancer world.
Taylor is about to begin her masters program in social work. She wants to find a job in a hospital setting and to be even more specific, she wants to work with cancer patients.
I asked her if she was aware of how tough a road that can be and with her back straightened and without hesitation, she answered, "yes."
There was something about Taylor that made me believe she knew exactly where she wanted her career to grow...she wants to help those who are traveling on that rough road.
Some people reach out to find a job while others search for the perfect place to share their calling.
Many of us have been lucky enough to have found one or more of these angels in our cancer journey.
There's a patient and family out there some where, who, some day, will say the same thing about Taylor.
What is the protocol for giving a patient the option of just living out his/her days the best way possible after a diagnosis of terminal cancer?
Is there something in the "How to talk to a patient" handbook that says don't forget this option?
I hope it's there because it needs to be part of the multiple choices available to patients who might get more misery than management of their disease with chemotherapy or radiation or even joining a clinical trial.
And that's another piece of this equation: Does offering the no treatment option squash all hope the patient, care giver and loved ones hold on to?
I think back to what a wise woman once told me about hope. She said HOPE changes as the cancer journey moves along toward its end.
We begin with hope for a cure. When that is taken away, our hope is that quality of life will remain good. When the disease starts to cause changes in that quality, we
hope the palliative measures will soothe any pain and finally we hope for peace.
Living the best you can, while you can with terminal cancer and without treatment is the right choice for some individuals, I'm convinced of that.
I'm also convinced it takes a strong person to make that decision.
It's a no armor, head to head battle with a very nasty enemy.
A family in crisis after their leader, their loved one, their person was stunned with a diagnosis of metastatic cancer.
It was the ultimate up and down of emotions any family has faced. The high, came after the unbelievable news of "cure" came from a doctor who had treated this patient for hepatitis for years. Many treatments later, one finally worked and he was handed a clean bill of health. The doctor actually used the word "cured" and all was good in the world. There were high fives, and even a margarita raised in celebration. The first real drink my friend had enjoyed in many years.
That lasted only days.
He felt "full" and thought enough about the unusual sensation that he went to his doctor and then a visit to the scanning machine.
This does not have a happy ending. Further tests have concluded what all of us here have endured in one way or another: cancer.
The ultimate low from the ultimate high.
Another battle is on.
How do we come to our decisions after diagnosis?
HOPE usually plays a part in the decision making process.
What if HOPE has already moved to the square where the hope is not so much about survival but about a peaceful, pain free end of life?
It's so much harder to reach a decision of no treatment. Does that mean we've lost all hope? Will there be second guessing and guilt that deciding against chemotherapy or radiation was not fair to the patient? OR...are we thinking of giving our loved one more quality time rather than quantity: more days doesn't always mean better days.
I'm on a bit of a rant this afternoon.
Twice this week I've had calls from friends who have asked for a translation. Their cancer doctors have spoken to them about their disease, but they've talked "around" the message. In fact, my friends have asked me what certain terms mean because these doctors couldn't come to grips with speaking openly and in street language and not "medical speak."
These calls have been filled with anxiety and tears. "Why can't they just talk to us and tell us what's going on?"
That is one question I can not answer.
So much of cancer world has changed. Thankfully, part of that has included straight talk from doctors to their patients. In many med schools now, young doctors are being schooled in how to talk to patients. Most family members and patients alike want to know the facts. The facts include the truth. They don't want "code" words and medical book lingo to get in the way of an explanation and treatment plan.
The people I heard from are educated and although they are frightened because cancer has entered their lives, they are much more annoyed at how evasive their physicians have been when explaining test results and prognosis of their disease.
These particular doctors aren't doing their patients any favors. The word CANCER has been introduced into their world. It's time to speak clearly, so they can understand what comes next.
Leroy would begin the last month of his life on this day, seven years ago.
He hadn't moved to the hospital bed in the family room yet, but I'd finally been persuaded to accept the fact that I couldn't take care of him alone anymore, so I had some health care aides visit during the daytime hours to help me. I hated it.
I'm not saying they weren't helpful. I'm saying I hated it because it meant letting go of some of the control I had as his care giver. Cancer takes away so much of who you are and what you do, so I guess the health care aides represented another piece of that loss.
He didn't like it either because it signaled his cancer had encroached on another basic part of his life: his daily care. Up until now, we had managed very well.
This was another mark on cancer's side of the scorecard.
Leroy's posse certainly noticed the beginning of the end, because we began to see visitors who hadn't come to the house in a long time. They'd stayed in touch via email and phone calls, but now they were coming to say good-bye. They came from thousands of miles away and from across the street. They came to hear that big laugh one more time.
It was the best month and it was the worst month.
Where do we get our calm?
When we first hear the words, "You have cancer" everything goes into over-drive. Our hearts race, sometimes there's tears, our muscles get tense and there's a brain freeze right after those words fill the room.
We want immediate action too. Once you've asked the doctor how much time you have left and what the odds are that you can beat it, we ask about treatment: NOW.
There is such an immediate need to do something. There can be no delay in killing those cancer cells. We never even think about how long it took the cancer to get to the point that it's made an impact on our lives. We have to act on it instantly, because we can stop it instantly if we do.
And then we calm down.
What causes this understanding to take over is any one's guess, but with more knowledge about what it is we're up against, comes common sense. We can't kill it instantly. We need a plan. We need the best care. We need to form the best team.
We find our courage.
It doesn't take long before we realize this is going to be a struggle. It's going to take time and effort from so many, especially the cancer patient.
We find and use our courage.
It must be sitting there, just below the calm.
Along with the lifting, there's the love.
We get so caught up in the demands of paying attention to the cancer , we sometimes forget to share our feelings and remind our loved one who is in the fight, that we love them.
There are so many ways to show it or say it, we just have to remember to take the time to do it.
A surprise note on the bathroom mirror, a foot massage, a hand written card or a simple kiss. And don't forget to say it, too.
I'm not sure there's any scientific data to back up how a little love impacts a cancer fight, but sometimes science doesn't matter.
I know love does.
Sasha, I have no idea if you're still reading this blog, but you were in my thoughts today.
I was thinking about how you coined the term "LIFTING" in all your posts and how we all came to use the phrase when we would talk about supporting one another in times of stress, sadness, fatigue and any other hard part of living in cancer's grasp.
It seems there are so many people in my circle of friends and acquaintances who are fighting the cancer fight these days. They are either just entering into their first treatment stages or the disease is starting to really take a toll on family, care givers and friends.
No matter where they are in the fight, they all need LIFTING.
Some have chosen to try to keep their diagnosis private for now, and it's hard to "LIFT" when you can't gather a team of lifters.
But I guess that's also a part of supporting a friend. Their wishes need to be honored.
It all goes back to what I tell everyone I meet who faces this challenge. "YOU can not do this alone."
And "LIFTING" is a big part of conquering this battle.