30 April 2014

6 month report

Every time this package comes I get sad. My Super Dangerous but Absolutely Necessary chemotherapy pills arrived again this week.
My Super Dangerous but Absolutely Necessary medicine.
I need to get used to it. I'll probably be taking them for the rest of my life. 
There are some clinical trials right now where CML patients who are doing amazing are being taken off their meds. It will be exciting to see what happens for them. Will the cancer come back? Will it mutate?  We don't know yet. 
What we do know is Tasigna, my Super Dangerous but Absolutely Necessary chemotherapy pills, WORKS. 
I got my 6-month labs back.

When I was diagnosed in October,  labs were drawn every week. My oncologist checked my counts - white blood cells, red blood cells, platelets, etc.
My counts reached normal values (values for people without leukemia) within 3 months. Great results. My medicine was working. And even though I didn't feel normal, my lab results said I was on my way.
Tasigna works by searching for a protein in my blood (a protein created by the blood cancer) and zaps it. Well, it's WAY more complicated than that. But that's how I can wrap my brain around how it works.
The American Cancer Society has a good scientific explanation of how Tasigna works.
At diagnosis, my oncologist measured how much of the BCR-ABL fusion gene is in my blood. It's measured again at 3 months, 6 months, 9 months, so on. The goal, my doctor said, was to reach a BCR-ABL value of 0.073 at the 1-year mark.
I'm at the 6-month mark and I'm already at 0.022.
I can't believe it!
Actually, I didn't believe it. I called my doctor's office to get it confirmed.
Boom! Just call me The Giant Slayer.
Everyone has giants they are fighting. Leukemia is but one of the giants I face. My pastor, Stu Hodges, at Waters Edge Church said Sunday we already have everything we need to fight the battle and win the war.
Focus on God, not the giants.
Max Lucado says it like this:
Focus on giants - you stumble.
Focus on God - your giants tumble. 
For now, I continue taking Tasigna, managing side effects, praising God and slaying giants.

18 April 2014

Yep, I blew it ... again

Someone come get my Mommy card.
Today's Good Friday. The day's name puzzles me still. I get that it's good Christ died for me. Christ dying on the cross for me and YOU is crucial to what I believe. But calling the day Christ died good feels wrong. 
So, yes, it's Good Friday.
Or, from my corner, it's "I didn't mail the Easter care packages to our college girls yet and now it's officially too late." They aren't going to get a lovely, fun, yummy and full of goodies package from me.
It was the Caregiver's idea to write this on my wrists.

They weren't planning to come home for Easter. The 20-year-old is at Auburn University (War Eagle!) and will be in Atlanta with some sorority sisters. The 19-year-old is at Lynchburg College (it's a great day to be a Hornet!) and will be in D.C. with her roommate. 
I love it when all our kids are home. It happens rarely now. These two are so far out the proverbial door only their heels are still inside.
They will both have a nice Easter and a fun weekend. But since they aren't going to be home, I've been planning to send them each a box filled with chocolate bunnies, Peeps and peanut butter eggs. And other things college girls need. Toothpaste, shampoo, an ankle brace, pictures drawn by the littlest sister, etc.
Now it's too late. It's Good Friday. It's not going to happen. I haven't even bought anything.

Damn cancer.

Yes, I blame the cancer. CML (chronic myelogenous leukemia) has messed everything up. It's taken my energy, a lot of our money and my ability to think clearly (chemo brain is real). I can't do what I want to do and it pisses me off. I already ask for - and get - help from all angles. But making Easter packages for our college girls is something I wanted to do. It's important that I pick things out. That I pack the box. That I put my love into the box.
I thought I could get it done.
I was wrong.
And now I blew it. It's too late.
The girls? They'll be mad that I'm feeling badly about not sending their boxes. They'll tell me "it's OK" and "isn't what really matters."
It's not like they will be sitting alone in their dorm rocking in the corner because their mommy didn't send them an Easter package.
They are awesome and I love them.
They'll get their boxes ... eventually. But I'm bummed I didn't get it done for Easter.
Christ at the cross is all about forgiveness. Christ will always comfort and forgive when we ask.
Why can't I forgive myself?

08 April 2014

CML survival kit

I'm glad there was no such thing as Facebook when I was in college.
Could you imagine a digital, permanent, documentation of just one of those events? It wasn't pretty. 
Oh, sure, there are a few photos hanging around in albums. But not very many. Developing film was expensive, you know.
Definitely one of the "perks" of going to high school and college in the 80s was the lack of the Internet and instant information.
But, today, the Internet and it's endless instant resources is the cornerstone of my CML (chronic myelogenous leukemia) survival kit - or my cancer hacks.

There are many "closed" and "secret" support groups on Facebook. Being "closed" or "secret" means only people who are also members of the group can see what is posted on the group page. I can post to any of these groups and get an answer to a question or words of encouragement within minutes. One of the biggest topics in these groups is which medication everyone is on, what side effects they are having and how are they dealing with the side effects.
It's an instant support group, 24-hours a day.
A few of the groups I belong to:
CML survivors
friends by choice ... CML sisters by blood (women only)
brothers and sisters by CML blood
living with CML
CML survivors and caregivers
To locate these, or any other Facebook group, type a search term in the Facebook search bar. Try typing CML. When you see one you like ... maybe there is a group near where you live ... you'll need to click the Join Group button. You should get a response to your request within a day.

Are you part of a Facebook group? Which ones?

Game Day
As I was doing research on Tasigna, the Super Dangerous but Absolutely Necessary chemotherapy pills I take, I found out the company that makes my pills, Novartis, has some programs in place to help the CML patient and family. One is getting ready to launch this weekend - Ph+ CML Game Day: An educational program for patients living with Philadelphia chromosome-positive CML and their caregivers.
If you have CML, you and your caregiver should both plan to attend one. The Caregiver and I are hoping to go to the one in Charlotte, N.C., on Saturday, June 7, 2014.
These are one-day events held around the country with sessions focusing on coping and managing your life living with CML. Physicians and health care professionals are scheduled to be there as well as the Novartis/CML celeb and patient Kareem Abdul-Jabbar.
By going, you'll also have an opportunity to meet other CML survivors. It's a game changer.
To register, see the upcoming schedule and who is scheduled to speak go to www.CMLPatientSummit.com.
The first one is this Saturday, April 12, 2014, in New York.
Oh, and the events are FREE.

Are you planning to go? Which one?

The Leukemia & Lymphoma Society
LLS, The Leukemia & Lymphoma Society, has a great website, www.lls.org, where you can find all sorts of disease-specific programs. They do an especially good job at caring for the caregiver.
Start by clicking the LLS link and then click the tab for Disease Information and Support. There you can select things such as Leukemia, Managing Your Cancer or For Caregivers.
You can request free educational materials by clicking here.
There is also a good discussion board network here. And online chats here.
LLS also has a Co-Pay Assistance program to help with the cost of medication and doctor visits. Find out if you qualify by clicking here.

Novartis Oncology
Novartis, makers of my Super Dangerous but Absolutely Necessary chemotherapy pills, also have patient assistant programs. You can learn more about what they offer by clicking here.

Cancer Hacks
Say what you will about Lance Armstrong, but the Livestrong Foundation, www.livestrong.org, absolutely ROCKS.
One of my favorites is Cancer Hacks, which is powered by Livestrong. Find it at www.cancerhacks.org. Basically, it's hacks (or tips) from other cancer survivors on things such as:
Researching your treatment options
Low blood count: Safe food suggestions
Home changes
Dealing with emotions
You can explore various hacks or even submit your own.

Livestrong also has an app on iTunes I use called the Livestrong Cancer Guide and Tracker App. You can track your doctor appointments, test results, journal, etc. Learn more here. Free on iTunes but you'll need to create a Livestrong account.
Or, you can get a print version of the Livestrong Guidebook Planner and Journal for free by clicking here.

Do you have a cancer hack of your own?

Here's where I need a disclosure statement. These are just a handful of the plethora of resources available online for cancer survivors and their families. I didn't even list the American Cancer Society. You can find them online by clicking here.
I'm sure I left out one of your "favorite" resources. Don't get mad ... share it ...