Craving salt?

It's a week of doctors and more testing in the land of Bone Marrow Transplants.
My latest diagnosis is POTS. 
Postural Orthostatic Tachycardia Syndrome (POTS). 
What the heck is it?
POTS is a form of dysautonomia (explained) that affects the flow of blood through the body, thereby causing dizziness when standing. Technically, someone has POTS if their heart rate increases by 30 beats per minute or their heart rate is greater than 120 beats per minute within 10 minutes of standing up.

What is dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.

I had been standing up and passing out for months. Finally, the BMT cardiologist tells me I have POTS and things begin to make sense. He starts me on medication to raise my blood pressure and another one to keep it raised once it gets there.

 Solved? Sort of. The medication needs adjusting and tweaking but eventually balances out. Fluid should be increased and salt intake should be increased. 

If you think you have POTS there are several Facebook groups and websites that help tremendously navigate symptoms, etc. 

3 years since transplant

My birthday cake, baked by my 10-year-old niece.

In the bone marrow transplant world, the date of transplant is celebrated as a birthday. The day my body got an all new immune system from my amazing donor in Germany.
Yes, I know who he is. I get to email him. And write letters. And send pictures. It's wonderful to be able to send him updates and for him to see his generous donation in action.
I wish I could meet him. Wow, I wish I could meet him. I'd probably cry. But I know I'd give him a huge hug. 
One day I'll travel to Germany and visit My Otto. That's what we (my family and friends) called him before we knew who he was and what his name is. And now, he signs his emails Your Otto. I love it.
So, it's been 3 years since my transplant. There has been No Evidence of Disease (NED) since transplant. No complications. No issues at all.
I'm very lucky. Some of my friends who have had a bone marrow transplants haven't been so fortunate. One has died. One has had complications and now has an ostomy bag. 
Before my transplant I was given 3-6 months to live. It was July. I'd be dead before Christmas. Because of God's grace, my donor was found and my life was saved on November 18, 2015.
I feel like I've been given a second chance at life.
But it hasn't been an easy road. It's taken a while to get my strength back. I asked my doctor how long it would take to get back to "normal." He said, "it takes as long as it takes."
Ugh. Not what I wanted to hear.
But, 3 years later, I'm getting stronger. I'm working hard to get my strength back. Physical therapy. Rest. Knowing when enough is enough and not overdoing it.
I go back to the transplant clinic in a few weeks for another biopsy to check for leukemia. Am I worried about the results? You bet. I hate the biopsys. I hate the 2 weeks of waiting to get the results. 
The doctor said the leukemia could still come back. But when I hit the 5 year mark, I'm considered cured.
2 more birthdays to go. Then I can exhale. Then I can relax and not feel like leukemia is lurking just around the corner, at the next biopsy, just waiting to be discovered.
I wish I wouldn't worry about it and simply live my life - enjoy my life. But I'm always worried it's just around the corner.
God says not to worry. He's in control. He's got this. And, logically, I know this. I believe this.
Why can't I just let go and trust? 

A Love letter ❤️

My dearest Otto,

I know that’s not your real name, but I’ve become so accustomed to calling you Otto, I think it’s stuck.

My tests results are back and they are perfect!

• My blood is 100% yours
• My immune system is 100% yours
• There is no evidence of disease (NED) anywhere in my bone marrow or labs.

I hesitate to say that we may just have beaten this damn cancer.  It’s been 2.8 years since my bone marrow transplant. The transplant team says if the cancer is going to come back, it usually comes back in the first 5 years. We haven’t had any big setbacks yet. I’m trying to be careful and nurture and appreciate your precious gift of golden cells. 

That’s what they look like when they are infused - a little bag of gold. 

I want to thank you for your precious gift that saved my life. 

• My husband, the Caregiver, we’ve been married 16 years now. That’s thanks to you. 
• Our 7 children were terrified, 6 of whom already lost a parent to cancer, this horrible, awful disease. (We we’re each married before.)  The thought I wouldn’t survive scared them so much. But I am alive, and thriving, thanks to you.
• My friends have been such an amazing support during my cancer fight. Stepping up to be Mom and Caregiver when needed. And it was needed a lot! And it’s seeming like I’ve won. That’s thanks to you.
• 3 of my daughters have graduated from college and are in the real world, making life work on their own. I thought I wouldn’t get to see that, but I did! That’s thanks to you. 
• Our youngest daughter has special needs, learning difficulties. She needs extra care. I get to help her. That’s thanks to you.

Sweet Otto, I could go on and on. But I know you will need to translate this to German. I just need you to know how special you are in my heart, in my husbands’ heart, in my kids’ heart. We consider you a member of our family - your blood pumps through my veins. 

Ich danke dir sear

Ich liebe dich

Patti

My 2.5 year Day of Testing

I had a bone marrow transplant 2.5 years ago. November of 2015.
That's a long time ago.
I went to my 2.5 checkup and my "Day of Testing" last week. I have to wait 2 more weeks before I get the results.

My "Day of Testing" included:
- a bone marrow biopsy (hurt like hell)
- a chest CT
- a pulmonary function test (so hard makes me cry)
- blood gas draw (that hurts)
- blood draw of 25 tubes (awesome)
- and, of course, vitals

What will all this tell me? I won't know for 2 weeks. The doctor will probably tell me that my results are all fine and still show as "No Evidence of Disease." NED. He's been my friend so far.

The problem is I'm on pins and needles waiting for my results. This is the longest 2 weeks EVER.
I know God's in control. I know he's got this. He hasn't let me down yet.

Lamentations 3:25-26  The Lord is good to those whose hope is in him,  to the one who seeks him; it is good to wait quietly for the salvation of the Lord

My friend Ned

In the world of cancer, oncologists throw around big, scary, strange, new words. 

Words like: chemotherapy, malignant, WBC, RBC, platelets, blast, stage, benign, metastasis, ned, margin, bcr/abl.

I could continue, but you get my point. It's almost an entire new language. 

I was diagnosed with leukemia in 2013. I came close to death in 2015. But thanks to God and a wonderful, generous, anonymous German man we affectionately call "Otto," a bone marrow transplant in November of 2015 saved my life. 

It's now 2017 and I'm STILL recovering. Turns out it takes a   L O N G  time to recover from transplant. I wasn't expecting that. I'm ready to jump back into my pre-cancer normal. Yeah, my doctors laugh at me and tell me it takes years to recover. Years. 

But I'm coming to terms with that. 

My visits to the transplant clinic get farther and farther apart. I go every 3 months now. I used to go every day. Every week. Every month. So every 3 months feels kinda reckless. 

But as long as I'm doing well (I am), as long as my labs are good (they are), and as long as there are no big problems (there aren't) the docs say I don't have to make the trek to clinic for 3 months. 

I've also gained a new friend. Some cancer patients aren't lucky enough to meet him. Some get to meet him but he doesn't hang around very long. Sometimes he comes and goes. 

His name is Ned.

He's not "real" - his name stands for No Evidence of Disease. And when those words show up on a report its glorious. 

Patients ask each other, "Have you met Ned yet?" 

Or there might be a tearful reply, "Ned has left and the doctors don't know if he'll come back."

Or, "Ned's here! Ned's here!"

He's the kind of friend you'd do anything (and practically do) to keep around. 

Every 3 months I get an excruciatingly painful bone marrow biopsy. But I don't mind because the biopsy is checking for Ned. 

We are celebrating because last weeks' biopsy shows that Ned is still with me. For 6 months now there's No Evidence of Disease. 

No Evidence of Disease!

No leukemia in my blood. No leukemia in my DNA. None. Not a speck. 

Thank you, Lord, for Ned. 

You know the feeling when you collapse into the arms of your mom or your husband or your best friend and you just know everything's going to be ok? That's what it feels like when Ned is here. 

But we aren't finished yet. The doctors tell me it's ok to be excited but don't exhale quite yet. Ned can disappear, without warning, within the first 5 years after transplant. 

My faith lies in this,

“I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”

Philippians 3:14 NIV

This is what love looks like

I arrived for my weekly appointment at the Bone Marrow Transplant Clinic in Richmond and signed in as I do every week. Then the nurse handed me this envelope.




I froze. It actually took me a few seconds (that felt like minutes) before I actually took the envelope. I went to sit down and wait to be called back for clinic.
Every week I go to the BMT Clinic. They access the sexy port in my chest (I'll spare you a picture), take anywhere from 4 to 34 tubes/bottles of blood and take my vitals. Then I either see one of the four transplant doctors or one of the nurse practitioners. Oh, and I get "repletions" (hate that word) if needed. Magnesium, platelets, blood, etc.
So I'm waiting to be called back for clinic and I can't seem to bring myself to open the letter. I held it. Turned it over and over. Excitement and amazement and guilt and rolling around.
Yes, guilt.
I should have written a letter to my donor before he wrote to me. I should have written a letter to him back in November when I received his amazing, selfless gift that saved my life.
Here's what I know about him.
He's a "young" man from Germany with the same blood type as me. That's it. That's all I get until the records are unsealed. I think it's 3 years for international donors? Be the Match has lots of information on what kind of contact donors can have with recipients.
After what felt like ages, I opened the letter.

Obviously, it's been roughly translated from his German language. But his heart translates beautifully. 

I treasure this. 

YES I could celebrate Christmas with my family.

YES strength has gotten me to this point so far.

YES it has gone well.

Oh, wow. Just wow. 

What he gave me is another chance at life. A whole new life. 

Now, what am I going to do with it?

*I did write him back. I just can't share it.

Day 82

I am 82 days post my bone marrow transplant. 

I'm still considered in the "dangerous" phase and will continue to be until I get to day 100. I have restrictions on what I can eat (nothing fresh, only processed foods), where I can eat (not out at a restaurant, meals must be prepared at home and by my caregiver), where I can go (not where there are lots of people and I have to wear a mask when I go out in public and I restrict visitors).

Day 100 is the big benchmark my team of doctors talk about the most.  Patients who make it to Day 100 without relapsing have a much better life expectancy than patients who relapse. 

What's my status? So far, so good. 

I'm officially in remission.

There is no evidence of leukemia in my bone marrow or in my blood. 

None. 

Yeah, I'm gonna write that again.

There is no evidence of leukemia in my bone marrow or in my blood.

It's hard to believe. I've fought so hard and struggled through so much in the 2 years since being diagnosed with chronic myelogenous leukemia. Especially since August, when the Super Dangerous but Absolutely Necessary chemotherapy pills I had been on began to fail. We switched to another pill, failed. Tried another, failed. 

A bone marrow transplant in November saved my life. 

The recovery has been tough and long. But oh, so worth being cancer free.

 

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.

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