Next goal ... Discharge

Engraftment is a huge party in my bones.
Next goal is discharge.
Today I'm at Day +13.  If all goes according to plan and there are NO setbacks. ...
I will get to be discharged THURSDAY. Like they day after tomorrow Thursday.
As my awesome Pastor Stu Hodges at my amazing church Waters Edge Church  says, Holy, WOW.
Lots to do.
I need to wean off the IV medication and back to the pills.
I need to increase my diet - and keep it down.
I need to walk 4 times a day.
Please pray STRENGTH over me that I don't mess up in 2 days all that God has done in 3 weeks so far.

Oh, yeah, kept finding little tiny hairs all over my pillow. I'm officially bald. And it's fine.
Here's me ...  and, yes, I'm smiling under there. XOXO

It's official ... we have engraftment

 My bags and machines ... 

In the Land of Bone Marrow Transplants, engraftment is the promised land.
It's the time/place/situation when the donor cells all find homes in their new body and start to grow and take root, if you will.
I'm officially there. It's only Day +12.
Happier I could not be.
If you'd like a more medical explanation, here ya go.
Basically, it means cancer's got no hold on me.
Still feel cruddy. That's all part of the process. Things will start looking up and I'll start feeling better as God makes me new.
Selfless donor, I just don't know what to say. XOXOX

Day Zero ... Transplant Day ... My new birthday

Wednesday, Nov. 18, I awoke to this adorable note on my white board in my hospital room in the Bone Marrow Transplant Unit.

Day Zero is the day given to the day of your transplant. It's the day you get your new cells ... Your new life ... Your new birthday.

Days leading up to transplant count down (-5, -4, -3, -2, -1). Transplant day gets a day all to itself (Day Zero). Each day after Day Zero counts up (+1, +2, +3, +4, +5, +6, +7, +8).

I'm going to try to get this post written and up before I fall back asleep. I've never been more tired in my life.
So, today, Day +8, is actually Thanksgiving Day.
From the little I've been allowed to know about my donor, he probably doesn't give a hoot about
Thanksgiving Day because I've been told he is from Germany.
So, today, on the 50th Thanksgiving of my life, the most thing I am thankful for is you, amazing, selfless, generous donor. You have saved my life. you have given my family a chance at more years with their mommy.
You may not realize what a HUGE thing you have done, but I have. my husband has, my kids have.
I don't know how to adequately say thank you.
THANK YOU.
I am MOST THANKFUL for you.

Day -1 ...

Tomorrow is Day Zero. 

I will get my new bone marrow tomorrow. 

I will have a new day to celebrate.

No more cancer anniversary for me. I get a new birthday tomorrow. That's the day worth celebrating. 

The transplant team has destroyed all my bone marrow in preparation for my donor's marrow. 

And it's painful. 

The the chemo is rough. 

I keep playing the song "Great are you Lord," from All Sons and Daughters.

I truly love this song. 

But, it's the chorus at the end that gets me. 

"All the earth will shout
Your praise
Our hearts will cry
Our BONES WILL SING
Great are you, Lord "

"All the earth will shout
Your praise
Our hearts will cry
Our BONES WILL SING
Great are you, Lord "

Listen to the Live version below. But you gotta listen to the end. 

Day -4 and -3 ... the hardest yet

Saturday and Sunday were the toughest days yet.

Finished the 16 doses of the first chemotherapy.  

Started the next chemo Sunday. With awful premeds to protect my bladder. 

Then the chemo.

Then the antigen. 

And I'm so nauseous. 

And diarrhea has joined the party. 

This is so hard.

I can't stop thinking of my donor. 

I need prayers for strength.  Right now. Please, stop what you're doing and cover me with strength?

And did I had the most amazing visitors this weekend. :)

Lindsey, me and Melissa.

Rare picture from my 20-year friendship with Cindy.

These two. Oh, how I love them.

Day -5 and all I am is weepy

I don't know why I'm weepy.

I miss my family. Weepy. 

It's too late to order breakfast and too early to order lunch. Weepy. 

Every 6 hours of chemo is rough. Weepy.

I just don't feel good. Weepy. 

I just want to go home. Weepy. 

Mike says no way. I'm in it for the long haul. Because the long haul is the cancer-free haul. It's just so, so hard. 

He also says it's ok to be weepy. So I cry and cry and cry. 

Then I get a video like this and from a precious little soul (turn up your volume),  and Jesus wipes my tears.

Here we go ... Day -6

In preparation for a bone marrow transplant the days count down until you get to Day Zero.
Day Zero is when the donated cells are infused - kinda like getting a bag of blood cells.

Today is day -6. Today I will get a continuation of high dose chemotherapy every 6 hours.
It started yesterday at 10 a.m., then 4 p.m., then 10 p.m. and 4 a.m.
Today is more of the same schedule. Chemo every 6 hours peppered with steroids to save my lungs, anxiety meds to, well, keep me from freaking out. Anti-nausea meds. Etc.
Day -6.
It's gonna be a long road.
But I'm excited to get to Day Zero. November 18.
I wonder what - if - my amazing, selfless, generous donor is thinking about right now.
He is all I can think of. Yes, I don't know much, but I do know my donor is a he. And he lives in Germany.
How cool is that ... my new bone marrow will be coming all the way from Germany.
A volunteer courier will bring it with a special medical passport, bypassing security. What a great job that would be. Flying all over the world bringing life-saving treasure to people you don't even know.
And all this is happening for me.
Maybe that's why I'm so weepy this morning. Thinking of all these moving parts - parts that don't know me - but are doing the amazing FOR me. For my husband. For my children.
How do you begin to thank someone for something like this?
Germany is 6 hours ahead of me. My donor, I've got to come up with a name for him, is maybe finishing up his work day. He's 30. I don't know if he's married. Or if he has kids. I want him to know I have 7 kids. Seven kids who are praying for him and thanking him for saving their mommy's life.
I'm praying, too.
Praying peace, grace and that you will feel God's loving, strong arms around you.

The ordinary

Woke up this morning and packed a lunch for my 6th grader.
I remember a time when I packed 7 lunches every morning. Seven sandwiches (some peanut butter and jelly, one just jelly, one ham - no cheese, one ham and cheese) all cut into triangles. Seven bags of pretzels. Seven bags of carrots. Seven pieces of string cheese. Seven little notes written with love and tucked behind the napkins.
Every single morning. It was exhausting and I dreaded it.
All my kids are big now. Four in college. Two in high school (they pack their own lunch - if they pack one at all). And one in middle school, 6th grade. I wanted to go have lunch with her at school today.

"Hey! (trying to sound like this will be the funnest thing ever) How about I pick up Chick-fil-A and come have lunch with you today?"
"Uh, no."
"I don't have to stay and eat with you. How about I just drop it off (figuring I'd end up staying anyway)?"
"MOM. NO. I don't want you to."

Ouch. That one stung.
She's getting bigger. She's growing up. It's a good thing. I know this. I just don't like it.
Especially today.
Tomorrow I go to Richmond to be admitted for a life-saving bone marrow transplant. I'll be in the hospital for a month or so. Then I'll need to live "within 30 minutes of the hospital" (their rule, not mine) for 2-4 months, depending on how well I'm doing. It will be months before I will get to bring my daughter lunch at school. Months before I will get to pack her a lunch.
So, when I packed her lunch this morning, I didn't dread it. I cherished it.
Such a simple little thing, an ordinary, everyday thing. Packing a lunch. But it meant the world to me today.
The ordinary is what I will miss the most.

Almost transplant time

I having a bit of a freak out.
In 12 days, I will check into the hospital to get a life-saving bone marrow transplant. I need this transplant. Without it, the doctors say I will not survive.
Not surviving is simply not an option.
My husband has already had a wife die from cancer. My kids have already had a parent die from cancer. I have to do everything I can to keep that from happening again.
So a bone marrow transplant is the only option.
The problem is, the transplant center is in Richmond, Virginia.
I live 90 minutes away.

I just completed two full days of testing at the Medical College of Virginia (MCV) in preparation for my bone marrow transplant. Things like a Thallium stress test, a CT scan of my head, a CT scan of my chest, a bone marrow biopsy, a pulmonary function test, taking 20 vials of blood to test for antibodies and viruses, and an assessment from the social worker.
It was exhausting. Mentally and physically exhausting.
But it was also the last hurdle before I go in for my bone marrow transplant.
I also got to see where I'll be living for the month after transplant. The transplant clinic at the VCU Massey Cancer Center is a 21-bed, self-contained unit. I like that it's separate from the rest of the hospital. I'll be with other bone marrow transplant patients.
So, typically, once a donor is secured (and my generous, selfless donor is ready to go!) this is the protocol for a bone marrow transplant:

Preparation stage - pre-transplant testing. This is the testing I just completed. All that's left to do is to sign the final consent papers. That will happen next week.
Conditioning stage: This phase involves heavy doses of chemotherapy with the goal being to kill my bone marrow and immune system and any cancer cells. All to make way for the donor cells. This conditioning regimin lasts about a week. It will start when I'm admitted to the hospital.
The transplant: Often referred to as Day Zero, transplant day can actually be anticlimactic for the recipient. The donor's cells are harvested and then delivered via a designated courier to my doctors at MCV. They are put in me through a central line - kinda like a bag of blood is delivered. Then the cells magically know where to go in my body.
Engraftment: This is when we wait. Engraftment is basically the donor cells taking hold and growing. Engraftment signs usually appear 10-28 days after transplant. Or, in transplant language, at days +10 to +28. (Since transplant day is Day Zero, the days after transplant are + and the days before transplant are -) Once my white blood cells are at a safe level, the doctors can talk about discharging me from the hospital.
Recovering after engraftment: This phase of my recovery, usually up to day +100, involves needing to live within 30 minutes of the transplant center. That means I have to live in Richmond for 1-3 months following discharge. This is the phase I'm struggling with. I can't seem to reconcile living away from my family for 100 (or more) days.
Long-term recovery: Finally getting to go home. It usually takes transplant patients a year or so to get their strength back and adapt to their "new normal."

I understand the process. I understand that in order to live to see many more Thanksgivings and Christmases, I must sacrifice this Thanksgiving and this Christmas.
And I am grateful for so many things. I'm grateful that the transplant center is only 90 minutes away instead of hours away - like in New York or Baltimore. I'm forever grateful for the donor who selflessly agreed to save my life. I'm grateful for all the help we've been getting. Help driving the kids to their jobs, etc. Help driving to doctor appointments. Help grocery shopping. Help preparing meals.
I am forever grateful for so, so much.

Which is why I feel guilty for freaking out about being away from my family for 100 (or more) days.
I think about how much time that is - how many events and milestones I'll miss - and I freeze. I don't know what to do. I don't know how to cope.
Forget the logistics of Christmas shopping, if we're talking 100 days then I won't be home until March. That's almost Easter.

I've been holding on to this Bible verse all week:

Now faith is confidence in what we hope for and assurance about what we do not see.
Hebrews 11:1

I'm trying to have confidence that I'll be home by the end of January.
And I'm trying to have assurance that my transplant will be successful.

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."

One day at a time

Everything in my life right now is focused on an event that is coming in the future ... but we don't know when.

Be the Match gives the above timeline for the transplant process.

I'm waiting for a bone marrow transplant. 

It will be amazing and incredible. Someone, likely a stranger, will generously and selflessly give me a chance to kick cancer to the curb. I'll get to start over with a brand new immune system (one that doesn't have any cancer cells). 

The transplant team says they are hoping for November procedure. But we don't have a definite date and won't have a definite date until a donor is finalized. 

And, it could take months to get my donor finalized. There are tests involved and matching that needs to be done. 

So, until we have a date set for my transplant, my doctors are watching me closely and trying to keep the leukemia in remission.

I finished up another week of consolidation chemotherapy today. I'll likely get another round of treatment in 3 weeks - sooner if my labs go downhill.

It's hard - no, it's impossible - to plan for this transplant.  I'm finding myself getting frustrated. How do I prepare for something if I don't know when it will be? Or how long it will last? Will it be over Thanksgiving? What about Christmas? Will the kids still be in school or will they be on break? Who is going to do the Christmas shopping? Will I be away from the house - living in Richmond - for the entire month of December?
I'm kind of a planner and this non-planning stuff is driving me nuts.
Talk about being forced to live in the moment.
This damn cancer is forcing me to be still and take things one day at a time.
Philippians 4:6 says

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.

Feels like He's talking to me. Telling me to be still, take care of myself and let Him worry about the details.

Remission

Got official word at my oncologist this morning ... I'm in remission!

I wear this every day.

Confirmed by my labs today and my bone marrow biopsy last week.

Whew. 

Hurdle, cleared. 

Thank you for standing with me in this fight. Thank you for holding me up. The notes, meals, calls, visits, prayers, have kept me standing. Have kept me going. Have helped me keep fighting. 

And the fight's not over. Not even close.

This damn leukemia ... Ugh. 

Now that I'm in remission I'm one step closer to a bone marrow transplant. In the coming weeks I'll be monitored closely to make sure I stay in remission. I'll also get more consolidation chemotherapy in early October - sooner if my labs warrant. And, if all goes well, transplant will happen in November.

Until then, "I press on toward the goal to win the prize ..." Philippians 3:14

Setback? I don't need no stinkin setback

Day 3 waking up in the hospital.

It was a rough night. 

For some reason I developed a fever (102). I then ate a cup of ice and promptly fell asleep.

I slept through:

- a bedside X-ray 

- two blood draws for a smear comparison

- blood pressure checks

- temperature checks

- an entire bag of IV antiobotic

- sweating, lots of sweating (yuck)

I awoke to Mike asking,

"Is this 'setback' going to delay Patti's treatment?"

He got a chuckle and a resounding, "No."

Chemo begins today.  

I had a beautiful day yesterday ... Right up until 15 minutes after this picture was taken. 

And the Calvary arrives today - my brother and his wife.  When my First Mike was diagnosed and things were looking bad, my brother and his wife moved up from Atlanta to help. So, it's good, and bad that they are coming. 

I need your prayers, please. My kids are terrified. Mike is terrified. I am terrified. 

So, today, I will leave you with this ...

You're braver than you believe, and stronger than you seem, and smarter than you think.

A forced sabbatical

Day 1: Waking up in the hospital instead of my bed.
It's been four weeks total on my new Super Dangerous but Absolutely Necessary chemotherapy medication (Bosulif) and it's the end of the world as we know it.
From dangerously low lab values, to this face ...

You should see the other guy ... 

Oh my.

Attractive, I know.

Monday, I went in to see my oncologist and had a "normal" visit. It was what happened when I got home that collapsed my world.

I had just walked in the door and the phone rang. It was my oncologist. 

"I looked at your blood smears under the microscope. And I REALLY don't like what I see. I want you to come in first thing Tuesday for a bone marrow biopsy."

Not good. Not good at all.

My husband and I arrive first thing Tuesday morning. 

Three consults, two insurance calls and three blown IVs later, I'm admitted to the Oncology ICU.

"We believe you're transitioning into blast crisis. You'll need to stay hospitalized through this process. And, we are looking at a bone marrow transplant."

Questions start spilling out of me, rapid-fire.

How long will I be in the hospital?

What chemo med will I be on?

How am I going to take our son off to his first day of college on the 15th?

Will I be out of the hospital by Christmas?

Will I be alive by Christmas?

I can't. I can't do this anymore. I don't want to be sick anymore. I can't watch my dear, sweet husband watch another wife die. I can't leave my precious babies, who have already lost a parent.

I. Can't.

But my God can. 

And I'm reminded that ... 

My character should be stronger than my circumstances.

My struggle always leads to strength

God's timing is always perfect.

God will never leave my side.

Chronic myelogenous leukemia presents in three stages. Most people are diagnosed while in the chronic phase (as I was). A transition to blast crisis (where I am now) is, simply stated, a crisis.

You can read more about the phases of CML here.

Dear dad on the swim team

Dear dad on my daughter's swim team,
I don't know what your name is as we have never met. I think we have smiled and said "Hey" to each other at the pool in passing a few times. I don't know how many kids you have on the swim team. And I don't know which kids are yours or what your wife looks like. I just know that my daughter is on the swim team with your kids and we belong to the same pool.
I was sitting with two of my teenage daughters during practice last week and then you walked by. There was a row of us moms sitting in lounge chairs watching swim practice at the end of one of the last days of the school year. It was hot. It was sticky.
One of the other moms stopped you and y'all were chatting. I don't know what y'all were talking about - I wasn't "listening," but could hear bits and pieces. I did hear you say you are, or were, a teacher. I was watching my daughter swim.
Then I heard you say something loud and clear.

"That's so RETARDED. There's no other word to describe it."

http://www.r-word.org

Y'all giggled a little and continued your conversation.
Bam.
I felt like I had been punched in the stomach. I should have gotten up and said something right then. It was as if I was frozen in place and couldn't move. I was so shocked that an adult, and an educator, would use such a word to describe something or someone.

You see, that beautiful 12-year-old girl swimming over in the pool - my daughter - is intellectually disabled. She just finished 5th grade, but struggles to read, struggles to write. She's really only about 5 years old on the inside. But on the outside she is 12.

She is funny, she is giving, she is shy, she is a hard worker, she is loving and she is officially diagnosed as having mental retardation.

Only, doctors don't use that term any more. She's intellectually disabled. The term retarded has become so derogatory, so painful to hear that the entire medical community has stopped using it. There's a public service campaign, Spread the Word to End the Word, going on that's making great strides.

Every time I try to tell this story to a friend, I cry. I was crying the day you said it. I'm crying now as I write this. I wish I had said something to you that day.

I want you to know that what you said hurts.
I want you to know that what you say gets mimicked by your children.
Someone told me I should just let it go. That you probably meant no harm.
And I don't think you did. I think you simply didn't realize using that word would hurt someone. And I don't think you knew my daughter was intellectually disabled.
But it did hurt.
So I'm asking, please, consider using a different word?

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.

Kicked in the teeth: a guest post from the Caregiver

Mike Moonis, the Caregiver (my Caregiver), is one awesome husband. Today, I offer a view from where he sits. You can follow him on Twitter here or Facebook here.

At the airport, headed to Mexico.

Sometimes caregivers get kicked in the teeth. 

As a caregiver, whether it’s some sort of cancer, Alzheimer’s, heart disease, or whatever, we try our best to make a difference in our love one’s life. Most of the time we succeed. We rub a sore muscle, we fetch a late night snack from the kitchen, or we lend a shoulder to cry on. We attend every doctor’s appointment and help remember that conversation we had just this morning. Successes, though minor in the big picture, successes none the least. 

This is not my first encounter as a caregiver to cancer. Fourteen years ago cancer picked a fight with me in the form of breast cancer with my wife, Lea. Like a rookie in the NFL, I was thrown into a world of learning the entire playbook the day after the draft. New terms, new teammates, new concepts, all focused on helping me help her. Together we studied the tendencies of our opponent, historical records that might shed some light on our own playbook that would form our attack on this disease. Surgery, chemo, radiation, we are winning. Then our opponent pulls out the trick play we never saw coming. Brain metastasis. A few months after that, BOOM, the game is lost. 

Recently, I sent my current wife, Patti, who has Chronic Myelogenous Leukemia (CML), on an all expense paid trip to Mexico that was gifted to her from a long-time friend. What a blessing for her to spend a whole week relaxing in a five star resort on the Mexican shore. We spoke many times and she FaceTimed us a few times. She looked and sounded GREAT. Long soaking bubble baths, resting on the balcony feeling the warm surf breezes, relaxing poolside with a bowl of ice-cream with sprinkles.  No complaints. 

Travel days were a little harder, but for the most part the trip was just what the doctor ordered. I was feeling pretty good that her quality of life was improving. The New Normal that we (she) have been dealing with since before her diagnosis seemed to be leveling out. I was very encouraged. On returning home, she was excited to tell the whole family about her experiences in Mexico and how much she missed us all. The second night home, I asked the question I always dread asking. … 

“How are you feeling, Honey?”

BOOM, reality hit me in the face!  It seemed the stresses of home had returned her to the New Normal we have become accustomed too. It was like getting kicked in the teeth. I could not help feeling like it was my fault that she was feeling as bad as she has felt over the last year and a half. It seemed to me and my pea-brain that while she was away, she felt better than she did when home. 

In no way do I blame her for this setback. She has the courage of David in the fight against this giant. I read more than a few comments on Facebook where patients are ready (or have already) to stop their medication, giving up on the playbook, because of their quality of life issues. I can’t begin to question their decision because I don’t really know their true story.  But I am grateful that Patti has the fortitude and the strength to continue fighting the fight. I have been blessed to be the caregiver of two strong women who love and trust God. And when I think of them and their fight, only one verse comes to mind.

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

 Now that’s a hell of a playbook! 

How to make adoptive families cringe

2. "Are you going to have any of your own real children?"
I remember standing next to my mother, I was maybe 11, and hearing a stranger ask this question to my mommy.

Eleanor and Ralph, my awesome parents, on my Gotcha Day.

We were in a check out line and this stranger was commenting on my dark eyes and hair and my mother's very blond hair and light eyes. The conversation continued and, eventually, my mom told the stranger that I was her "little adopted angel."
It was then the question came.

"Are you going to have any of your own real children?"

I sank. Pretended not to hear.
My mom, however, smiled sweetly. And then totally let the woman have it.

"Does my daughter not look 'real' to you?"

She continued on. I don't remember exactly what was said. But I do remember smiling and feeling proud of my mom as she blasted this ignorant soul. It was glorious.
I have always known I was adopted. And I have never been ashamed of being adopted.
I have an older brother (from my mom's first marriage) and a younger sister who were not adopted. There were many miscarriages before they made the decision to adopt. It was a difficult process for them - financially and emotionally.
Throughout my life I've heard all sorts of comments from people. Most are made out of ignorance.
The next time you encounter an adoptive family, don't say these things ...

1. How can you love her as much as your other kids?
Seriously? What?
2. Are you going to have any of your own real children?
We already talked about this one.
3. You two look like you could really be sisters.
First of all, God's funny like that. Second of all, we are really sisters.
4. Do you know the parents?
Uh, we're the parents.
5. Aren't you afraid she'll find out she's adopted?
She knows she's adopted. Why would we keep that a secret?

Are you in an adoptive family? What's the worst thing someone has said to you?

#selfie4Karen

One of the groups I belong to on Facebook is called Friends by choice ... CML sisters by blood.

It's a closed/secret group of "just women coming together to share their CML stories or to even just vent, encourage and let loose and connect with other ladies."

There are 509 of us in the group.

One of us entered heaven on Dec. 30. She had been fighting chronic myelogenous leukemia for 15 years. 

I never got the chance to meet Karen in person. All I knew of her was from what she posted on Facebook. And, quite often, she would pop in to the CML sisters group, post a selfie and simply say "hi to my sisters." It was her trademark. A simple selfie. Her sweet smiling face.

One of her last posts to the CML sisters group was a selfie taken during her ambulance ride to the hospital a few days before she died. Even then she looked beautiful.

In honor of her we are all posting our own selfies to the CML sisters group. #selfie4Karen

It's beautiful. So beautiful. One of the CML sisters counted 150 so far. Wow.

Looking through the posts, here's what struck me about the photos ...

A handful of us are in the hospital.

There's a picture from a hospital bed. A few more are wearing hospital gowns.

But we don't look sick.

We look young. Happy. Beautiful. Strong. Not sick.

I know a lot of us feel crappy - I read it in our posts every day. We struggle. We have pain. We have fears. We have frustrations. We have anger. We have cancer.

I treasure this group of women. They are wise. Compassionate. Inspiring. Giving. Silly. They understand what it's like to live with this cancer. 

And they smile anyway. 

Today, the smiles are for our dear, sweet sister, Karen. It feels like she's getting a standing ovation. 

One of the CML sisters posted "I feel like I just met all my sisters with all the selfies."

Another CML sister said "I LOVE seeing everyone's beautiful faces. I know Karen would love that we are thinking of her and celebrating her spirit." 

My #selfie4Karen