16 December 2014

The Caregiver takes a sick day

A dear friend sent me this quote yesterday.
The Caregiver is home sick today.
And he's not a good sick person. He's moaning the same if he has a sore throat or if he has the flu. You'd think, from his behavior, that he's been diagnosed with Ebola.
My day usually happens in blocks of activity. My first big block is getting kids out the door to school. It starts at 5:30 and ands at 8:10 when Little H gets on the bus. 
It's an exhausting block of time. The 3 high schoolers get up and head to their bus by 6:15 (WHY do they go so early? Makes no sense to me.). Then, if Little H hasn't already woken up, I get her up. 
She has no concept of time. And no understanding of words like hurry, fast or run. If you have a toddler, you know exactly what I'm talking about. 
"No, no, no," I say, "please don't take everything out of your backpack to organize it by color now?"
But, lately, she's decided to "re-lace" her tennis shoes every morning. It's so frustrating I actually hid her tennis shoes one day. She had to wear her boots to school. They don't lace up. They simply slip on. 
A win in the Mommy column. 

This morning didn't take any special diversions or bribes to get to the finish line. It was a good morning. She got ready without incident or complaint. It was fabulous. I was feeling glorious, victorious, as I watched her get on the bus. 
Heading back to my room, the first part of my day complete, I'm feeling pretty good. The Caregiver is sleeping.
I lay down and close my eyes.
I jolt awake. I had slept for 2 hours. 
"I'm sorry, honey, I must have fallen asleep," I said.
"Sorry? Why are you sorry?"
"Because I'm supposed to take care of you. Can I get you anything?"
Then he says, "Oh, yeah? I don't want you to take care of me. Don't you remember, you have cancer?"

I'm supposed to take care of him. I'm his wife.
He wasn't trying to be mean or hurtful in what he said. He's trying to be helpful. He feels guilty asking me for anything or complaining about anything. 
"You have cancer. And you will always have cancer. I have a sore throat and some awful respiratory thing. But I won't have it forever."
What am I supposed to do with that? 
How do I continue being the wife, mother, sister, friend, whatever I want to be while living with cancer?
My brain can't make sense of this one. 
I head back to bed. Feeling defeated. That's when God nudged me (or, rather, smacked me over the head) with this verse: 
Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
John 14:27
Jesus isn't holding me to some ridiculous, self-imposed standard.  With Jesus, I can't be defeated.

05 December 2014

The Red Line

My crazy, awesome family having Thanksgiving dinner.
I've been on pins and needles over here for the last month. 
I've felt pretty good lately. Actually, I've felt just good enough that I have to remind myself to slow down. To take it easy. To remember, I do actually still have cancer.
Every three months my oncologist runs a test that measures how much of the Bad Protein (BCR-ABL) is present in my blood or bone marrow. And, depending on the level, it's a good indicator of how well the Super Dangerous but Absolutely Necessary chemotherapy pills are working.
Since June, my levels have started to creep up. And in September, the level actually crossed back over the Red Line.
This magic Red Line represents MMR or major molecular response. At the beginning of my treatment for CML, the goal was to be at or below the Red Line at my 1-year mark.
So, you can see why I've been nervous, waiting for the proverbial other shoe to fall. What would my oncologist do if my BCR-ABL didn't fall below the Red Line? Change my dosage (again)? Change my medication? Yuck.
I was worried for nothing. I'm so proud of this little graph. 
The drugs are working. Wow. One year later and I'm right where my doctor wanted me to be.
The Caregiver and I just kind of stared at each other. 
Disbelief, I guess. Thinking the other shoe was going to fall and actual surprise when it was my BCR-ABL level that fell. 
Then I jolted back to reality.
"This awesome result doesn't mean I'm supposed to feel awesome now, right? Because I don't."
He seemed to hold back a smirk.
But then, being the compassionate one, told me like it is.
"He said you've hit MMR. You still have leukemia."

You still have leukemia.
The words kind of hung in the air.
You still have leukemia.

"Now it's about managing your side effects and finding your 'New Normal.' You're still going to feel shitty sometimes. Now you just get to feel shitty while staying alive for longer ... a lot longer."

We laughed.  I can be kind of high maintenance. I know that comes as a shock to you all.

Below is my beautiful masterpiece entitled Red Line. Enjoy.

This graph represents the levels of the Bad Protein (BCR-ABL) detectable in my blood/bone marrow. At diagnosis (Oct. 2013) it was 73.37%. As you can see, it plummeted, then began to inch back up. I didn't expect to get the 0.025% reading.

19 November 2014

Thriving though the holidays*

*with cancer
*or any horrible, painful, awful, life-sucking disease

I get it. You are the one that "makes the holidays happen." You are the one that plans the menu, goes to the store, buys the gifts, decorates the house, attempts the crafts, plans the class parties, coordinates the Christmas picture, orders the Christmas cards, mails the cards ...
And now, as Thanksgiving is around the bend, you find yourself dealing with the following holiday joy-killer:


I'm talking Grim Reaper Fear.  Fear-is-a-four-letter-word Fear.  Sleep-with-the-lights-on Fear.
This is my second holiday season since I was diagnosed with CML (chronic myelogenous leukemia). But by the grace of God my disease is being managed with medication. My doctors tell me my life expectancy is well past 5 years - as long as I don't become resistant to the Super Dangerous but Absolutely Necessary chemotherapy pills I take twice a day. And, as long as there are no gene mutations of this awesome cancer.
So, to me, resistance and mutations are always just around the corner.  Hovering around like in-laws or guests you know could show up at your door any second. Awesome.
What if this is my last Thanksgiving?
What if this is your last Thanksgiving?

It could be, you know. You could load up the van and head home from the grocery store and end up in a ditch. Every day, people die from things other than cancer.
Pretend, just for a minute, that this is your last holiday season. That next year, your family will look back and remember THIS year because it was your last.
What will you regret spending time on?
Who will you regret not spending time with?

Fear will try to freeze you and keep you from experiencing the Right Now. Fear will snuggle up like a lover and but then tell you nothing is worth doing and to simply give up.

My amazing pastor, Stu Hodges,  at Waters Edge Church said this:
"I just want to give you permission today to lower the expectation of you and raise the expectation of God and watch and see what might happen this holiday season."
Not a mention of Fear. Sounds more like Faith, to me.
None of us are guaranteed next Christmas.
You are too sick to do the shopping?
It's too painful to decorate the tree?
You don't have the energy to prepare the meal?
Those things don't matter. Spend your time with the people you love.
The Right Now is not about the presents. It's about being present.

30 August 2014

A birthday and an anniversary

I'm asking that y'all keep our family in prayer this weekend.

Today (Aug. 30) would have been my husband's birthday. He would have turned 60 today. The last birthday we got to celebrate with him he turned 46.

Tomorrow (Aug. 31) is the anniversary of The Caregiver's wife, Lea's, death. She died in 2000.

We've been experiencing these days without them for 14 years now.
That's a painfully long time.

We "do death" differently in our house. We have pictures of Mike and Lea everywhere. We talk about them freely and frequently. They are very much a part of our lives and a part of our family.
Birthdays and death anniversaries and wedding anniversaries are celebrated. Over the past 14 years we have done all sorts of things to celebrate and remember Mike and Lea.
Things like:

  • release balloons
  • share a favorite dessert (Twinkies for Mike, blonde brownies for Lea)
  • share a favorite meal 
  • go to a favorite restaurant
  • go to a favorite place
  • do a favorite activity
  • share stories
  • watch home movies
  • look through photo albums

It's difficult to explain and, I'm sure, difficult for others to understand, how so very much The Caregiver and I lean on each other and hold each other up. We held each other and cried early this morning. We still love, miss and ache for Mike and Lea.
If you are told, "time heals all wounds" or "you'll get over it," you've been told wrong. That's a lie. And I wouldn't want it any other way. In my mind "getting over it" equates to "forgotten."
Time passes and children grow and we continue to live.
Fourteen years later, it still hurts. Our spouses are still gone. Our children's parents are still not ever coming back. We all still cry.

Kiss your family this weekend and hold them close. XO

14 August 2014

An itty bitty cut

I have CML.
I like to pretend I don't.  Which is silly, really. But it's the truth.
Some days, pretending I don't have cancer, blood cancer, pumping through me constantly and continually is the only way I can keep going.
Then something will happen and the CML monster will smack me in the face.
This time it was an itty bitty cut.
I don't even remember when or how it happened. It didn't bleed. There is no scab. There is no scar. But it must be there because it resulted in a nasty staph cellulitis infection in my inner forearm.
My inner forearm began to swell. Looked kind of like a bruise, really. My bracelets were suddenly tight. And it started to hurt to use my hand. Then it got very swollen. And red. And hot. And getting bigger. And hurt lots.

Hmm. That's odd, I remember thinking.
The Caregiver insisted we call the oncologist, which I knew was the right thing to do. I was so hoping it would simply go away. But, as I was reminded this week, I am immune suppressed. Things don't simply go away anymore.
One week and 28 hefty antibiotic doses later ... it's better. Not completely, but getting there.
So far, so good.
As long as I keep improving, it's a wait and see game. I'm praying the antibiotics did the trick. They interacted with my Super Dangerous but Absolutely Necessary chemotherapy pills something awful. Horrible nausea, dizzy, headache. Yuck.
It's surprising how something so small could have been the gateway to something that has been so painful and hard on my leukemic body.
We have to be ever mindful to stay guarded against the things (however itty bitty they seem) that can grow and eventually cause us so much pain.
Left untreated, they can swell and continue to try to destroy us.
Left untreated, they can ruin our very being.

11 July 2014

Another one bites the dust

One of the great things about being a Grown Up is that there are moments, sometimes even entire spans of time, of great clarity.
This isn't one of them. 
Everything is confusing. 
Everything is a struggle.
Everything is an uphill battle. I'm walking in the proverbial snow. Barefoot.
I'm trying to do everything "right." 
Yet, I can't make sense of anything. 
Damn cancer. 
Little victories matter a great deal at this point. Anything I can measure that indicates progress is something to be celebrated. Savored.
So, today, I celebrate getting through another week of my Super Dangerous but Absolutely Necessary chemotherapy pills. Today, this giant falls face-first in the dust. 

Another week down, the rest of my life to go. 

08 June 2014

The tutu

I haven't written in a few weeks. I haven't felt well. Usually, my New Normal is not that great anyway. But I can't even seem to reach my New Normal.
I felt bad enough (vomiting and dizzy) I actually called my oncologist.
"Yeah, he wants you to come in," the nurse on the phone said. I go in Monday.
I had planned to walk in the survivor lap for the York/Poquoson Relay for Life last week. I even made an orange tutu (like you see runners wearing sometimes) that I had planned to wear. It looks awesome.
But I didn't get to go. And it ticks me off.
And then I beat myself up because I think I sound ungrateful for all that I do have. My proverbial cup overflows. I realize this. I try to model a gracious and grateful attitude for our kids. I have been and continue to be blessed beyond belief.
But today, right now, I'm just ticked off.
Damn cancer.

So, I put on my orange tutu and took some pictures. My sister in Tennessee says I should wear it everywhere I go for, at least, a week. We'll see.

Patti in her tutu.

Go Team Patticakes.

23 May 2014

Mommy grace

My high schoolers leave the house before I get out of bed.
I hate this. Really, I do. For 13 years I drove my kids to school. I loved having them trapped in the car with me for 20 minutes or so every morning.
Five minutes or so into the drive, I'd announce, "Topic of the Day!"
Groans and sighs from the back of the van.
It's the same every morning, yet they acted like they had no idea it was coming.
I'd pose questions, situations and we'd discuss. Sometimes serious, "If you were to die today, would you have any regrets?"  Sometimes silly, "If you were a food, what would you be?" Usually a Freedom of Speech debate. Oh, ask my kids to give you my "Election Day/it's a privilege and duty to vote" speech.
Good stuff.
A mommy friend of mine recently had her third child. They are officially outnumbered. Having seven kids, I'm WAY outnumbered. But I remember having three and feeling paralyzed. I began to get teary-eyed thinking of my 22, 20 and 17-year-olds as 5, 3 and a newborn. Then my tummy tightened up as I remember taking them all to get a gallon of milk one day.
I pulled some of ideas out of my Mommy Bank and suggested a few of my tricks-disguised-as-games.
Now, it's 17 years, four kids, death of my First Mike and my cancer diagnosis later.
Now, I'm yelling at Little H when she pulls the laces from her shoes and is practicing how to lace them.
Now, I'm snapping at The Son because the trash didn't go out.
Now, I'm scowling at K because I got a form this morning and it was due yesterday.
Now, I am not having fun with my kids.

Where did that other mommy go?

The bus is coming to get Little H in 10 minutes and she is brushing her teeth  s l o w l y  . Then she starts to have a freak out.
There's a TAG in the side of her shirt. "Get it out. Get it OUT. GETITOUUUUUT."
Never mind she's worn said shirt probably eight times and not even noticed this mean 'ol tag.
I sigh. Grab scissors. And, not very gingerly, send the mean 'ol tag to the trash. I exploded.
"We have to go!"
Then, my Little H comes over and gives me a huge hug. Lays her head on my chest, pats my back and says, "It's OK, Mommy."
Oh, Little H. I knelt down and looked into her big brown eyes and told her, "I am so sorry I snapped at you. There is no excuse. I will try to do better."
She smiled up at me. She's full of grace.
I need to give myself grace.
I gave advice to another mommy friend with young kids last week. Apparently, I'm better at giving it than living it.
This friend, the supremely talented and witty young adult fiction writer, looked me smack in the eyes and said, "Give yourself grace."
She tells me to love myself. Right where I am.
The Bible, in 2 Corinthians 12:9, says,
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
Rest in God so Christ's power can rest on me. God's grace is enough.  For Little H. For me. For you.

16 May 2014

Hit by a truck

Teased into believing I actually felt better, I had grand plans for the week.
Aside from the usuals, I added a mammogram and a gastroenterology appointment and a therapist appointment into the mix. 

So, when the Caregiver's glasses broke this morning, the stress sent me to the place of no return.
Stress paralyzes me.
I walk back into the house after getting little H on the bus and am flooded with stress. No matter what room I peer into, things are screaming at me. 
Fold me ... Basket of towels in the family room
Vacuum me ... Hall, foyer, steps, family room.
I'm smothering ... Dining room table, littered with papers and books and cords and cups.
Wipe me ... (Not that kind of wipe me) counters in the kitchen.
Get me some milk ... Fridge is screaming.
And my kids aren't even home.
All this yelling is from the things that can't even really speak.
Defeated, I head upstairs to my sanctuary. Haha, sanctuary. If your house if like mine everything that "doesn't have a home" ends up in the master bedroom. Some sanctuary. 
I'm going back to bed. 
This is the balancing act of my life with CML.
Things I want to do, things I used to do, I no longer have the energy for. As time goes on and as my body adjusts to the side effects of the Super Dangerous but Absolutely Necessary chemotherapy pills, I'm told I'll have more energy. I'm told I'll be able to do more. And I  believe it. Because I have been feeling good lately. So good that my schedule is filling up again and now I'm "doing too much."
My body yells at me, too. 
I start to run a low-grade fever. 
I start to ache more.
I start to get snarky (snarkier, I guess) with my family. Why are we the nastiest with the ones we love the most? I hate that. Hate that I do that. Someone very wise once told me, 
"Treat the ones you love the most as if they were strangers."  
Best advice I've ever gotten. One of the toughest things to practice.
So, I continue to plan my day. Continue to plan events - whether it's watching my daughter kick ass in varsity tennis or taking the van to get an oil change. And although I continue to plan, I must be ready to listen and hear what my body tells me. Because I do have cancer. I do have CML. And I may end up in bed. Even when I don't want to.

14 May 2014

Lean on me

I was diagnosed with CML right before Light the Night.
At my 6-month mark, it was time for Relay for Life.

How fitting.

Having CML (chronic myelogenous leukemia) means I get tired easily and often. That makes participating in events and survivor walks difficult, at best. But, at both events, I was held up by amazing, giving, selfless friends and my dear family.
So, for your viewing pleasure, here are pictures from the Patticakes team at the Newport News Relay for Life.

Me, The Caregiver and 3 of our daughters walking the survivor lap.

The family (plus 1 boyfriend and missing 2 daughters still at college), some Relay SWAG and
my dear friend over at runningwithletters.blogspot.com, Cynthia.
Let me tell you about Charlotte and Suzy.
These 2 beautiful young ladies had a "bookmarks and baked goods" sale to raise money for the
Patticakes team. These amazing 5th graders raised more than $200.
That's their awesome mom and dad, Julie and Doug, in the bottom picture.

Amber and her husband Joe are 2 of the most giving, genuine people I've ever known.
Amber is also an amazing elementary school art teacher. The picture on the left is the luminary bag
she created especially for me. Notice the AU in the top corner, and the words "giant slayer" in the ribbon.
Love it! Love them!

The top, left picture is of Sarah and Jason and 2 of their cute kids.
They have stood with me since I was diagnosed.
On the right is the wonderful Ashley and Robert and below is their beautiful princess. She loves me.

I've leaned hard on these 3. Robin, top left, and Nate, top right, since my first Mike died.
Below is beautiful Pat.

Debi is a long-time cancer survivor and friend. The top picture is the back of her survivor shirt.
Bottom pictures are of her and me, walking the survivor lap and in front of the survivor ribbon.

Some shots of my beautiful family. They mean the world to me.

And finally, some luminaries.

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 ...

21 March 2014

I get it now

I finally understand.
The Caregiver and I helped start a camp for grieving children, Mikey's Camp (named after a dog, not one of my Mikes). We believe it so crucial for kids who have experienced the death of a loved one. Every camp, we hear, "this is the first time I've been around other kids who actually get it." It's usually the first time kids meet other kids who have lived through the death of a parent or sibling.
A whole new world has opened up for them. A world where they don't hear,
"Yeah, I know how you feel, my dog died and I've been really sad."
Instead, they hear,
"My dad was sick and dying for weeks."
"My mom won't stop crying. Or get out of bed. Or stop wearing pajamas."
"I hate sleeping in the room with my dead brother's things."
Well, I get it now.
Novartis, the drug company that researches and makes my Super Dangerous but Absolutely Necessary chemotherapy pills, flew a group of CML (chronic myelogenous leukemia) survivors and their own caregivers to a two-day summit in New Jersey last weekend. I will update the details of the summit in a later post. But, it was a great experience.
The weekend began with a yummy lunch at a fancy hotel. The Caregiver and I were the first ones of the CMLers to arrive. Then, others started coming in and it began.
"Hey, I'm Patti."
Some of the CMLers and caregivers. New Jersey, March 2014.

"Hey, I'm F. This is R. You a 'blood sister'?"

I smiled.
And the room filled up. It filled up and I look around and realized they all have cancer, pumping through their veins. Just. Like. Me.
After introductions and we figured out who were the CMLers and who were the caregivers, the conversation quickly switched to finding out which drug everyone is taking and the side effects they are dealing with.
Wow. This was awesome.
Don't get me wrong. It's not awesome that all these other people - some as young as 30, some who still want to get pregnant and start a family, some who are years into their diagnosis - all have cancer. No. That's not awesome at all. That sucks.
What was awesome was that they all get it. They understood how I felt. They've been there. And there was a whole room full of people. Just. Like. Me.
That was awesome.
So, yes, I get it now. When the kids head to Mikey's Camp and meet other grief survivors and are so excited to meet the kids who are just like them, I thought I understood. My father died when I was 9. There were no grief camps in the 1970s. All my friends still had both their parents. But I know what it's like to be 9 and have your daddy die. Then when my First Mike died, I thought that I could, that I did, understand how our kids were feeling. And maybe, hopefully, I did OK. But that's not the same.
It's not the same as walking into a room and seeing it fill up with people who truly get it. People with hopes, dreams, kids, caregivers, pains, struggles. Just. Like. Me. That is amazing.

04 March 2014

Fear and loathing from the back side of 40

Birthday flowers.
Today is my birthday. 
I say that not because I want songs, or presents or recognition (although I did get all these things today) but because there was a time I wasn't sure I'd actually be here for today.
I have been trying to discover my New Normal while living with a cancer diagnosis since October. 
I remember the doctor's declaration distinctly. 
"You have leukemia."
Wait, what? 
That's cancer, right, of the blood? You can't be serious. Cancer killed my first husband and now you're telling me I have it, too? How am I ever going to tell my kids?
What went through my mind?
Fear. Fear of the unknown future. Fear that there won't BE a future.
My brain immediately starts spinning and spouting off worst-case scenarios.
I'm going to die (not anytime soon).
My hair will fall out (eh, it changed, got thinner).
I'll need a bone marrow transplant (nope, only if the Super Dangerous but Absolutely Necessary chemotherapy pills stop working).
They'll admit me to the hospital (nope).
I'm going to die (not anytime soon).

Thanksgiving came. I watched from the couch, huddled in blankets, suffering from the effects of the Super Dangerous but Absolutely Necessary chemotherapy pills as my children prepared all our traditional dishes. My mind slipping into thoughts of "What if this is my last Thanksgiving?"
Which quickly became "What if this is my last Christmas?"
And then "What if this is the last ..."
Looking back now I realize it was fear driving the bus. And here's what I figured out: If I let fear drive me around I will end up frozen. So frozen, in fact, that I'll be unable to experience what's happening right in front of me. I'll miss it. All of it. 
The thing is, if I focus on the "what if ..." I realized I will miss out on the Right Now.
So, with a little help from Isiah 41:10, I told fear to get on the bus and go. 

"Do not fear, for I am with you; do not be dismayed, for I am your God. 
I will strengthen you and help you; I will uphold you with my righteous right hand."

My New Normal is going to take some getting used to. But I do know that I want to be a participant in this New Normal and not a spectator. Today I got to experience my first birthday since my diagnosis and it's been my best birthday yet.  It's been complete with flowers, friends, singing phone calls, a massage, baked goodies, chocolates, laughter, and the love of my amazing family. It won't be my last. 

14 February 2014

No one is forgotten

"Nobody has ever measured, not even poets, how much the heart can hold."
― Written by Zelda Fitzgerald in her novel, Save Me The Waltz.
I remember, specifically, Valentine's Day 1989. I was working on the city desk at the Ledger-Enquirer newspaper in Columbus, Ga. This day in particular is big because it's the first one I experienced as a member of the Real World. You know, on my own, college graduate, buying groceries, full-time job, etc. I was working the night before the Big Day and I remember mentioning how "sad" I was because I wasn't going to get any valentines. 
I came to work and on my desk was a little envelope. 
"Miss Patti," it said. "My dad (who was the city editor) said you weren't getting any valentines so I made this one for you."
Best valentine I ever got. And the only one I got that year. It hung on my desk for years. No, I don't know where he is today. I guess he's 29-30 now? Married, getting little valentines of his own. He probably doesn't even remember making it for me. I guess it's so precious to me because it was done out of pure love. The kind of love that little kids show with wild and reckless abandon, not caring who sees. He saved me that day. His little 6-year-old gesture made me feel I was not forgotten. 
After my First Mike died, I announced, to no one in particular, that I was never going to get married again. Yep. Never even going to kiss another man. Ever. How could I? How could I even pretend to think that I could love again. After all, I was still in love with First Mike. It didn't matter that he was dead. 
God has a funny way of changing up my plans. If you're smiling, He's changed yours around at some point, too. 
I did marry again. Current Mike (the Caregiver) and I met at a children's grief support group. His wife had died. They had two little girls. First Mike and I had four kids. When First Mike proposed marriage to me, he asked my father for permission. When Current Mike proposed marriage to me, he asked my children for permission. 
I remember people being angry at me for getting married again. They said they didn't understand how I could "do that." They said they didn't understand how I could replace First Mike. They said it seemed I had forgotten him.
Wait, what?
I didn't replace him. He's not forgotten. I still, even today, love him. 
Most people don't understand this. How could I be in love with First Mike and also in love with Current Mike?
I explain it this way. When our first child was born, we were brimming with love and awe. "She's amazing. Spectacular. Never before has there been a baby so incredible." We wanted to have a second child. But, frankly, we were afraid. "How in the world will we ever love another baby as much as we love the one we already have?"
Then God does this amazing thing. Just when you think your heart is full, he pulls it and stretches it and grows it. And you discover, yes, you do have room in your heart for more babies after all.
That's what it feels like to be married again. The space in my heart that belongs to First Mike still belongs to him. God expanded my heart and I discovered I loved Current Mike, too. When I thought my heart was full, God pulled it and stretched it and made more room. Blew me away.
No one is forgotten. Not today. 

11 February 2014

What leukemia has taught me

I have leukemia
Sometimes it helps to say it out loud. So I can hear it. Sometimes it helps to write it down. So I don't forget. So I'm not so hard on myself. And, in trying to make some sense of my new life as a leukemia survivor, I have discovered that I had (and still have) a lot to learn. Life as a cancer survivor, it turns out, has taught me a great deal.
I'm a list maker. So, naturally, I've compiled a list of 10 things - 10 big things - I have learned since my diagnosis.
The first three on my list were so big, so shocking to me, they deserved posts of their own. I've listed them and linked to them below.

1. The oxygen mask goes on me first.  You can read about it here.

2. Chemo Brain is real. Click here.

3. Teenagers are still, well, teenagers. Click here.

I feel as time moves on and I live with this disease items will probably move on and off the list. But today, at the 4 months since diagnosis mark, this is the rest of my Top 10.

4. To Do lists: I will NEVER get the laundry done. And I'm finally OK with that. My To Do list was usually lengthy and detailed. But I'm not able to cross things off my list anymore. I'm too weak, too tired, too queasy, too dizzy, too sick to get anything done. I've learned to create a different list. Now I have a Ta Da list.  It's a list of what I was able to get done. "Ta Da! Look what I did today!"

5. Listening: Within hours of finding out I had leukemia, a friend from my awesome church, let's call her L.B.,  gave me the emotional energy I needed to create team Patticakes for 2013 Light the Night (the main fundraising event for the Leukemia & Lymphoma Society). Every excuse I tossed at her she pushed away.
"It's only two weeks until the event. It's not enough time. I can't! No one even knows I have leukemia. I only found out a few hours ago."
She said, "It's perfect timing! You can do this!" 
She was right.

6. Support: More people care about my family and me than I ever realized. The physical support at Light the Night was breathtaking. The fundraising of more than $4500 over two weeks time was nothing short of a miracle. Team Patticakes was the second-highest fundraising team on the Peninsula in 2013. (Relay for Life is coming up ... Get ready!) We have also been blessed with such generous gifts of time, prayers, meals, baskets of snacks, house cleaning, money, cards and love. You have made a difference. 

7. Disease: On Oct. 7, what I knew about Ph+ chronic myelogenous leukemia you could hold in a teaspoon. Today I could explain it as simply or complexly as you want. Cancer research and the scientists who dedicate their lives to fighting this disease are literally saving lives. As little as 10 years ago, my go-to treatment would have been a bone marrow transplant and IV chemotherapy. Sitting in an IV therapy chair for hours at a time. I am fortunate that only four Super Dangerous but Absolutely Necessary chemotherapy pills a day are sufficient to bring my white count under control. I thank God for these scientists every day. They have made a difference

8. Pain: In the beginning, my bones and bone marrow were jam-packed to the brim with leukemia cells. So jam-packed that my spleen started trying to take on the burden of  "I have too many leukemia cells and no where for them to go" and became swollen and very painful. It hurt to eat. It hurt to breathe deeply. It hurt to move my arms and legs. It just plain hurt. Then, after being on chemotherapy for weeks, sometimes when leukemia cells rapidly die off it can cause a release of uric acid, causing intense pain in the legs and arms. So it still hurts. Having leukemia has taught me that I shouldn't suffer through the pain. I shouldn't "buck up" and take it. I should take it easy. Use the prescriptions. Use the heating pad. Sit in a hot tub. Get a massage. Do whatever works. 

9. Love: A good friend of mine once joked that the reason I had so many kids (7) was because I was so high maintenance, it took that many people to take care of me. Ha ha. Something I hear a lot is "Wow, you have your hands full with that big family." I do, I guess. But my heart is full, too. And having a full heart kind of trumps everything else.
What it means is that there is always, always someone here who loves me ... just because I'm me. The way my kids and my husband, the Caregiver, treat me hasn't changed. They love me no matter what. They don't look at me with pity or sadness or tiptoe around because Mommy has cancer. And I love that.

10. Faith: I am not in charge. Of course I didn't want to be diagnosed with cancer. But, it doesn't matter what I want because I'm not in charge. God is. My father died when I was 9. My husband died when the oldest of our four children was 9 leaving me a widow at 35. And, now, a cancer diagnosis. But my life is far from over and I expect there will be other trials I will have to face. 
And that's OK. God has been with me every step and will continue to be with me. Sometimes carrying me. Sometimes holding me up. Sometimes pushing me. But, hopefully, shining through me. 
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

01 February 2014

Simple Guy: a guest post by the Caregiver

Lyrics from Lynyrd Skynyrd's "Simple Man."
Mike Moonis, the Caregiver, is one awesome husband. Today, I offer a view from where he sits. You can follow him on Twitter 
here or Facebook here.

I’m just a simple guy. 
I like meat and potatoes, even if it’s just a hot dog and French fries.  I don’t like to think too much. If too many thoughts get in my head at one time, I get mixed up and I have to cull out some ideas just to get a handle on things. I think a lot of guys fall into this category. NOT ALL.
Some intellectual types, some well versed fellows and the worldly traveler dudes appear to be able to sip on a glass of 20-year-old scotch and debate the ins and outs of the literary works of 18th century authors like Jonathan Swift or Samuel Johnson (yeah, I had to Google them). 
Not me. I only want to know if anyone can beat Hank Aaron or Babe Ruth’s home run record (without having an asterisk next to their name). 
On the other hand, most of the women I have the pleasure of interacting with on a daily basis DO NOT fall into the “simple mind” category.
For example, my wife, (yes, Chemo Brain herself) finds it amusing to sit there while I’m trying to relax (getting a hockey score or two) and pelt my ears with heavy question after heavy question.
"Did you know what happened to Helen in school today?” 
“Tomorrow I have a doctor’s appointment at 12:30. Can you take me?”
“When you’re not busy, could you read this article I saw on Facebook about what you get when you pour molten aluminum into an ant hill?”
These are all solid questions, which I should hear and spend the appropriate amount of time contemplating (well maybe not the ant hill one, but it was interesting).
but not all at once.
Not in the amount of time it takes for my coat to leave my shoulders and hit the floor. Oh yeah, I went there. We simple guys need time to process our thoughts. Time to order our thoughts into some semblance of importance and, only then, take one individually and process each subject to its end. 
But, Chemo Brain is firing off questions faster than a Gatling gun. Cranking off thought after thought until my brain is riddled with meaningful questions. Now her thoughts are mixed up with my own questions. 
“Who is going to play 3rd base for the Yankees next year?”  
"Are Tim and Tickle going to get their MASH to the STILL in time?” 
“I wonder how long it’s gonna take for her to call me out for the coat on the floor thing?”
There seems to be no hope for me. Simple Guys need simple instructions to make it through the day. The Bible is a complex read, yet, once you break it down into smaller chunks, things become crystal clear. Narrowing down your focus to simple truths will bring all your questions to a simple and manageable result. 
“So give your servant a discerning heart to govern your people and to distinguish between right and wrong.”  1Kings 3:9A
“Blessed are the poor in spirit … Blessed are those who mourn … Blessed are the meek … Blessed are those who hunger … Blessed are the merciful … Blessed are the pure in heart  … Blessed are the peacemakers  … Blessed are those who are persecuted because of righteousness  … Blessed are you when people insult you  … Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you.”  Matthew 5:3-12
Simple, right?

27 January 2014

Doctor Day

He burst through the door like he was Kramer from Seinfeld. His smile was huge. He wasn't acting very doctor-like. 
"You've GOT to be feeling better?" 
I paused. I was afraid this was going to happen. The question hung there, screaming at me. Mocking me. 
"Your labs are the best since I've been treating you."
It's true. Amazing, awesome, fantastic, breathtaking news.  My labs are the best they have been since at least May. That's 8 months. If you've been pregnant (5 times, thank you very much) or know someone who has been pregnant, you know that's a lifetime. Well, I gotta tell ya, I loved being pregnant. I'm fortunate. I actually felt great pregnant. The past 8 months felt nothing like that. 
"You feel a little better, right?"
I couldn't look at my husband. He's amazing. He has been next to me every step, every procedure, every Doctor Day. It's not his first time being the Caregiver. He and I both know how grueling it is being the Caregiver. We both stood by our spouses, weapons tirelessly drawn, ready to attack whatever cancer popped up with next. I used to tell my First Mike, "No worries! It's just like shooting ducks." I was wrong.  Fighting esophageal cancer is like betting against the House. New Mike's wife (yes, both my husbands are Mikes ... and both of us wives are Patricias ... that's a little God Nod) lost to breast cancer. We didn't know each other as my husband and his wife were dying. I'm not sure we could have seen past what was right in front of us. 
We both have been to Caregiver's Abyss and come out on the other side. And now, he's Caregiver again. My heart breaks for him. 
This time will be different. This time his wife won't die.
"Right?""Yes. I think I feel a little better? I think I have a bit more energy?"
Confetti and balloons fall from the ceiling along with my face.
I demanded ... "Dammit, stop being so happy. I still feel like crap. This fight isn't over." But what came out was ... "If my numbers are so good why do I still feel SO bad?" 
I'm not even sure my oncologist heard me. He says we'll know more in a week when the Big Results come in. Tells me I don't need to get labs drawn for 3 months.
Three months? How am I going to track my progress? How am I going to know I'm getting better? He agrees "just because it's you" to 6-week labs. Yay.
On the ride home, Caregiver gently smiles at me and asks if I'm OK. I start to cry. 
I'm trying to be happy, I am. I'm trying so hard. But my labs say one thing and my body says something else. 
We'll get there, he says, and takes my hand.