10 things not to say to someone fighting cancer

Today is my cancer anniversary. Or, cancerversary. My kids didn't believe that's actually a word, or even an that it's an event to be celebrated.
Two years ago I was diagnosed with chronic myelogenous leukemia (CML). Things have not gone according to plan.
I failed one of the best front-line oral chemotherapy pills, Tasigna.
Failed another one, Bosulif.
Now I'm taking Iclusig. My oncologist thinks it may be causing some issues with my heart. But is worth the risk because the CML has gone rogue.
I transitioned into blast crisis.
Spent almost all of August and September in the oncology ICU.
Have had three rounds of IV chemotherapy, HiDAC.
Achieved remission.
And, finally, I'm awaiting a bone marrow transplant from a selfless donor found through Be the Match.
So much for getting a "good cancer" and simply taking pills for the rest of my life to keep me alive.
Oh, yes. I've been told, "At least you have a good kind of cancer to have." Excuse me?
I've had 2 years to hear gems like this. Here's my list:
10 things not to say to someone fighting cancer:
1. At least you have a "good cancer."
I think they mean at least my kind of cancer is treatable. Or that the treatment doesn't usually include removing a body part. Like breasts. Or part of my colon. But a "good cancer?" No. There is no such thing as a "good cancer." Spend an afternoon with one of our 7 kids and then tell me I have a "good cancer."
2. Let me know if you need anything.
I've seen this one floating around the internet lately. It's a wonderful offer. But I'm never going to ask you for help. Never. I can't think about what I need you to do for me. I can barely think about what I need to do for myself. Between Chemo Brain and unbelievable fatigue, it's all I can do to get through the day.
Instead, ask my husband. He will be able to look at his To Do list and give you a real answer for your amazing offer. There is actually a team of people coordinating things for me - rides that the kids need, shopping, meals, etc. Mike can add you to the list.
3. We can beat this.
We? I love that you are standing with me - sometimes holding me up. And when I go for the bone marrow transplant that will save my life I will need SO MUCH HELP.  Tell me instead that I can beat this and that you'll be standing with me through it all.
4. But you look amazing!
I think this one is said with the genuine hope of trying to be nice. But it makes me feel like crap. How am I supposed to look? But more importantly, I don't feel amazing.
5. I know how you feel.
Nope. You don't. You are not me. You do not have the kind of cancer I have. You have not already had the love of your life die from cancer. You do not have 7 kids. Nope. You do not know how I feel.
6. I just know you'll be OK, so many people are praying.
I believe in God. I trust Him completely. I believe in prayer and I pray. But that's not how it works. The more people that pray does not equal a "yes" answer from God. If it did, my First Mike would still be alive. God answers prayer. But sometimes that answer is no.
7. Have you tried this herb or magic pill or pixie dust?
I'm doing the best I can and putting my trust in cancer specialists. While I appreciate your suggestions, sometimes the things suggested can negatively affect the chemotherapy I have to take. And it can be dangerous.
8. God doesn't give you more than you can handle.
I do trust God. Completely. And I see His hands everywhere, everyday. But why does God think I can handle so much?
9. Have you prepared your kids?
Prepared my kids? There is no way to prepare anyone for something like this. They are terrified.
10. Nothing.
There are some people in my life who, since I was diagnosed with CML, have simply disappeared. I don't know if they don't know what to say? Are scared?
I feel sad and miss those friends. Conversely, there are many people who became my friends since my diagnosis. These friends are amazing. They stepped up right when the going got rough.

The best thing you can say to someone fighting cancer?

"I love you and I'm here for you."

Time to show Tasigna the door

For the first time in 603 days I woke up and didn't take my Super Dangerous but Absolutely Necessary chemotherapy pills.
Feels reckless.
I take Tasigna, twice a day, every day, because I have Chronic Myelogenous Leukemia (or CML). And I will take oral chemotherapy pills for the rest of my, hopefully, long life. That's why I feel so reckless.
I got some labs back that are not so good. The level of BCR-ABL (the protein that enables the leukemia to grow) in my blood is rising. And over the last few months, has spiked.

The first number is at diagnosis. Below the Red Line is the goal. 

So, my local oncologist and my CML specialist in New York had a meeting of the minds and I will be transitioning to a new drug.
My oncologist actually gave me a "title," if you will. He said he's never had a patient fail on a drug as fast as I failed on Tasigna. Awesome.
Time to show Tasigna the door and switch drugs. It's a good thing. Tasigna isn't doing the job anymore. The side effects are no party, either. Awful bone pain. Nausea. Fatigue (hate that word - it doesn't do justice to the extreme exhaustion that is fatigue). Rash.
Possibly, I will feel better on this new Super Dangerous but Absolutely Necessary chemotherapy pill.
It's called Bosulif. Here's the tagline about the drug:

BOSULIF is a prescription medicine used to treat adults who have a type of leukemia called Philadelphia chromosome–positive chronic myelogenous leukemia (Ph+ CML) who no longer benefit from or did not tolerate other treatment.

It has different side effects.  One being diarrhea. Headaches. Edema. Fun times. But not everyone experiences that. Maybe, maybe I will feel great on this drug.
I'm scheduled to start the Bosulif in a few days. The transition plan is to stop taking Tasigna and get it out of my system before I start the Bosulif.
But it sure feels like I'm being reckless.
At the end of my appointment, my oncologist looked me dead in the eyes and gave me the Gang of Four speech again,

Air. Water. Food. Bosulif.
That's it.

Am I afraid that I failed my first drug within the span of 2 years? Yes.
Am I afraid that this drug won't work? No. I think it will work and will work fast. I think I'll be back below the Red Line in no time.
I know God's got this under control. I just have to be still.
"Be still and know that I am God," Psalm 46:10

No mutation detected

A watched pot never boils. Think that's really true? It has to boil eventually. I guess watching it makes it seem like it's taking forever.
Forever is how long it felt while waiting for my mutation and resistance testing to come back. 

The refrigerated kit arrived March 17.

OOH, biohazard bag.

The vials lived in my fridge for a week.

The vials with my blood a week later.

My blood mixed with the magic solution.

My blood added to the magic solution.

Off it goes.

I found out yesterday - 2 weeks after my blood travelled to the west coast - that the lab results were back all the way from Oregon. But they wouldn't tell me the results because the doctor needed to go over them.
Talk about stress. That was a long 24 hours.
I got word this afternoon, just after lunch.
NO MUTATION DETECTED.
Sigh.
I feel the weight lifted off my chest. No mutation detected. Very, good news.
But what does it mean to my treatment? Why are my Super Dangerous but Absolutely Necessary chemotherapy pills not working? Not sure yet.
I will find out next week. I'm still waiting for a heart test, as well. 
No mutation detected. 
I feel I can exhale now. For 3 weeks I've been living with my "What if" brain.
What if there's more than 1 mutation.
What if my body can't take the new drug.
What if the new drug doesn't touch the mutation.
What if ...
I know my fight against CML is far from over. Having a resistance to my Super Dangerous but Absolutely Necessary medicine is not a good thing. I'm sure it means there will have to be changes. Changes in treatment. Which means changes in side effects (yuck).
No mutation detected.
Today, I'm celebrating this little victory. 
And I'll keep fighting.

I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.Philippians 3:14

Update

Me and The Caregiver, arriving in New York.

Thanks to the generous hearts and pockets of many, The Caregiver and I were able to travel to New York City for an appointment with Dr. Michael Mauro.
He's a CML (chronic myelogenous leukemia) specialist. One of the best in the country. A Magic Man.
We wanted to talk about my quality of life.
I hate that phrase. Quality of life.
The fact that I am alive means I have a life that has quality.
I also have a body that is exhausted from pain that just won't go away. A brain that is puzzled because the latest BCR-ABL lab results are higher still.

Dr. Mauro wants me back below the red line.

Me and Dr. Mauro.

So we travel by train to see the doctor. We are convinced he can tell us why the CML is doing this and how to fix it.
What he tells us is that he suspects the Super Dangerous but Absolutely Necessary chemotherapy pills I take faithfully twice a day have stopped working. Either I have developed a resistance to the drug. Or I have developed a mutation and the drug doesn't work.
Not great news.
Not awful news.
Labs are drawn and tests are scheduled and in the span of 14 days or so we will know what exactly we are dealing with. Then my Magic Man doctor will pick the next drug depending on the results of the tests.
It was a good visit and we are both so, so glad we went. He wants to see me back in 3 months. And once we start the new drug will be monitoring me closely.
I'm have a laundry list of things to do. One is to set up an appointment with our local oncologist/hematologist and go over Dr. Mauro's plan and see if he's on board with it. 
I'm a little nervous. What if he doesn't agree with the plan? I don't think that's the case. But the question lingers in the back of my head.
As we were getting off the train when we returned home, I looked down and found a small, round pin. It has Rosie the Riveter on it and says "We Can Do It!" I picked it up and kept it. 
A little nudge from God. Letting me know He's got this. I don't have a thing to worry about. 

Therefore do not worry about tomorrow,

for tomorrow will worry about itself.

Each day has enough trouble of its own.

Matthew 6:34

My nudge from God.

Gratitude

Every once in a while, as a mother, you get a glimmer, an affirmation, that all you have done has been worth it. Today, my oldest daughter, the 23-year-old, gave me this amazing gift. This guest post is from my beautiful daughter, Alice. You can follow her on Facebook here.

Me and Alice, Thanksgiving 2014, Corolla, NC

If anyone has had a family member endure cancer before, they know it will not only wring you dry emotionally, it will wring you dry financially. The magnitude of this problem can be seen in the fact that a popular American TV show is based off a guy starting a meth empire because he needs an impossible amount of money to tackle his medical bills when he is diagnosed with cancer. 

My mom has not started a meth empire, but she has some loving friends whose lives she has touched, who had the idea to give back by starting this fundraiser. The costs of treating cancer alone demonstrate its powers to cripple not just your joy, your energy, your family, your love, your years yet untapped, but also, cruelly and insatiably, your pocketbook. 

Couple that with the cost of supporting children- not just children, but SEVEN children with unique health problems, hopes, and dreams of their own, and I literally could not tell you how my parents cope with the stress of it. 
I know Mike works harder than I have ever seen anyone work at anything so he can provide for his family, sacrificing every aspect of his life and every minute of his (rare) spare time to make sure our lives are okay. 

I know my mom continues to be my mother, in spite of all the forces of the world that would take her and make her otherwise, she continues to be actively involved in my life and the lives of all her children- she continues to care when I get good grades or a new job or when I come to her with my fears and my dreams. I know that even when cancer has sapped her energy, from somewhere deeper than life itself, from somewhere stronger than our human bodies themselves, she finds it, and it flows from that Source of the Eternal Love of the Mother endlessly and profusely, with a fire of love and a warmth of light that cancer has not and will not ever find in its power to take away. 

It seems the Universe has heard our cry, and despite the garden of abundance among which we found ourselves when we thought we were condemned to a deserted foreign land, the Universe has seen fit to smile on that abundance, to open those flowers of love, to shed loving tears of nourishing rain. We have been given provision beyond all reckoning, and kissed with infinite genuine love by the souls of kind spirits all around, and yet the Universe said, "No, I have more to give you." And we looked around, just when we thought we possessed all the abundance of the world, and saw that there was more.

My mother, though her levels are looking better, does not feel this 'better' of which they speak. Her doctor says, well, that's your quality of life with leukemia. But such a quality of life is no life at all if he is to cast such a final judgment. We have hope that she does not have to suffer every single day for the rest of her life. We demand that that cannot and will not be true. Her networks developed through her online activism in the CML community have told her legends of a specialist in New York, a wizard of sorts, who is the best of his kind, who can work wonders- who can maybe, possibly, offer her a promise of something better. 

This fundraiser, created by a friend, was just an idea that my mom initially dismissed as "tacky, rude" to "ask for money". We were expecting maybe a hundred dollars, at best, and that hundred dollars would have been a blessing and would have helped. 

But we were not given a hundred dollars. We were given TWO THOUSAND dollars. TWO THOUSAND DOLLARS, not by organizations, but by real human beings, from their personal finances, from their savings accounts, from their weekend date money, from their grocery budgets, from their own paychecks- given, just freely given, with a force of love blowing with such magnitude that the iron clutch of cancer is forced to relinquish just a little, and breathe the cool breath of loving relief, just for a moment. 

Because of those people, those angels, my mom is going to get to see that specialist. She might get her life back, or parts of it that resemble a mosaic more of her choosing. 

We might get to keep her a little longer- she, my Mother, my only Mother, the only one I will ever have, through whom the Universe flows nourishment like an umbilicus of love and nurturing flowering my spirit in a way that no one else can, she connects me to my Source, she shines her light on my life and I grow into something wonderful, she makes my life okay but being here, just being here, and to think that she might get to be here a little bit longer- thank you. 

My soul weeps with joy, my spirit leaps, and my heart shines with the promise of what yet may come- Hope, which is our lifeblood, which propels with vision into a meaningful future, which colors and enriches our lives- you have given hope to me. 

Thank you. 
Thank you so much.
Click here to see the Give Forward fundraiser.