28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
I got 7 vials of blood drawn yesterday.
They are running some special tests - I've got some odd reactions going on. I’ve got the shakes, actually. My legs and my hands. I don't think it’s related to my bone marrow transplant. But who knows, really?
Not feeling well.
Being tired all the time.
Having to ask friends for rides to appointments.
I’m sick of it. All of it.
I want to go back to 2013. Before I had cancer. Before I even knew what leukemia was.
Back to when my kids were still home and they ran through the house laughing and fighting.
I feel like it was October of 2013 and I was told I had leukemia - I turned around - and suddenly it’s 2019 and I still feel like crap.
The shaking makes it hard to type and write. But I wanted to get out how I was feeling.
I try to focus on the good things.
I feel better than when I had my bone marrow transplant in 2015. And I feel better than I did most of 2016. But I’m not feeling as if I’m improving at a steady rate anymore.
I guess I’ll see how this latest lab work shakes out. (Ha, get it, shakes?)
And, most importantly, I haven’t lost faith. I still believe God heals and that all things work together for good. <><
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?
So, I dropped my youngest child off at HIGH SCHOOL. I wanted to just sit in the parking lot all day. I didn't. I went home. I turn on the TV and an old episode of Grey's Anatomy is on. It's the one where Izzy (dying from cancer) and Alex get married. I start crying like a baby. It's the show, not because of HIGH SCHOOL. ha ha Well, here's the thing, Izzy's hospital room is covered with notes and cards and photos. I mean there's not an empty space on the wall. Alex and her had just gotten married, and Izzy's hair starts to fall out. Wow. Flashback to 2015 when I spent months in the hospital with blast crisis CML turning into blast crisis AML (leukemia, it's bad). My hospital room had notes everywhere, cards everywhere, pictures everywhere. And when my hair started to fall out, we had a head shaving party. Looking back, sure, I felt awful and was fighting hard to stay alive until a bone marrow transplant donor could be found, but at my head shaving party were 3 of the pastors of my church, my darling husband and two of my children. We took pictures; it was a blast. Then I start thinking about the endless, endless stream of visitors that I was lucky enough to enjoy. Also, my best friend from high school flew up. My best friend from college flew up. My little sister flew up. I loved seeing all my dear friends. Loved it. Weird, right?
It was, realistically, the worst time of my life. Fighting for my life. And looking back I can't help but smile. Smiling through tears. Happy tears. So, thank you, Grey's Anatomy, for reminding me of how good it was, even when it was bad.
We downsized and moved to a small house we call The Small Cottage. Six of our 7 kids have moved out of the house. They are either at university or out in the world. We are SO proud of them. But miss them terribly. Well, we haven't given them a key to The Small Cottage, so there's that. We moved because of my health. Stairs are difficult. A big house is difficult. I couldn't keep up. So, the move is sad because I no longer hear all the chatter from the kids (the one kid left doesn't make much chatter), and the move is sad because my health couldn't take living in a 3800 sq. foot house any more. We're feeling settled in. Familiar pictures are up; furniture is arranged; "stuff" is out where it's supposed to be. My stacking doll collection is arranged on the shelf. My card collection is in it's place.
I thought, "Hey, we're moved in."
Then I walked into the kitchen and saw my bananas. I have a killer banana bread recipe. I've been using it since 1994. Where is it? I start to literally panic. It lives in my special recipe book. But I don't know where it is. So much sadness. I will have to throw the bananas away. I will not use another recipe. Only mine. Ugh. My dramatic panic starts. Then Child #5 walks in (today's her birthday, by the way, she turns 20).
"I know where the recipe book is."
No way no way no way no way! And sure enough, she went to her room (where all the unpacked boxes live), and came back with my magic recipe book. It was all there. All of it. All the clippings. The one's from my mom, who died years ago. The ones from my dear friends. Like Grandma Janet's banana bread. So, we're going to make banana bread today. But the best feeling was walking into the kitchen this morning and seeing that book on the counter. It felt so good. It feels like I'm home.
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.
It's finally happened. The moment of parenting we've been working toward since day one. Six of our 7 children are now living on their own. As in, not home with me. Not right down the hall. I feel like I am un-tethered.
Out of control.
That I can't keep all my plates spinning, up in the air.
Like I've got no purpose.
That I'm wandering ... Aimlessly. And no one would notice if I teetered off the edge.
I don't know why I feel that no one would notice. Based on all the comments and notes and prayers, lots of people would notice.
I feel loved. But isolated.
Time is moving slowly. Not being marked by any significant event.
I have a paltry "to do" list littered with insignificant items, at best, because The Caregiver and my doctors don't want me to push too hard and relapse. That could land me in bed for days.
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