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.
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.
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."