For the first time, since this whole diagnosis of Acute Myeloid Leukemia, I am just beginning to own it. Not in an "it's mine, you can't have it!" kind of way, but more in an, "Ok, I can not deny the existence of the need for this transplant any longer". This is not a light thing. I've been through so much treatment and learned so much about being a patient, being patient, the vast abilities and limitations of modern medicines, and faith. So now, as my treatment continues, I guess I am thinking of the best ways to do it.
If you are just coming to this story, here's a little bit of background. In 2009 at the age of 46, I was completely blindsided by a cancer diagnosis. My family was living in Chicago and getting ready to relocate to London, England. I had a 3-year-old son, a 9-year-old son, and a 14-year-old marriage. Busy with little ones, I went to my OB for some check-ups before we moved because I had no idea how quickly I'd be finding a doctor for myself in London. I was fit, a yoga teacher and ate extremely healthfully.
I then got a call from my OB saying the lab screwed up and I should come do my bloodwork again. So I did. And apparently, the lab did not screw up. My white blood cells were crap. The doctor referred me to a hematologist at Northwestern Memorial Hospital who gave me an appoint two months out. I said, "Are you sure it's ok to wait that long?" He said, "Sure! Go enjoy your summer." So I did. I did not have a single symptom. Not one. Unless you consider getting breathless while you're pushing a stroller with a three-year-old in it up around the hills of Presido Park a symptom. Which I didn't.
Scroll forward two months later on a Friday, they retake my blood, give me a bone marrow biopsy and diagnose me with AML. So on the following Monday, instead of going to London to look at housing, I'm packing a bag to go into the hospital for six weeks for an induction round of chemotherapy that we all hope will put me in remission. The brakes on life had just been applied. All our lives. My family and my friends.
The tears and fears and shock and the outpouring of love were all overwhelming. I was forced to take myself and my health very seriously. I was forced to ask for a lot of help. And I had to watch myself go from highly functioning to highly dependant in a minute. My family went from excited about an adventurous move to paralyzing horror in just over a weekend. It was head spinning.
Induction for me included three different chemotherapies, some slowly dripped into me, some injected, and one an ungodly color red. After six weeks inside a hospital during the most gorgeous Chicago Autumn weather I ever stared at through a window, we found out I was in remission. These six weeks included an emergency operation for appendicitis while having no immune system and a full understanding of what exactly being neutropenic is. Chemotherapy for AML completely blows out your immune system. It has to. It's trying to reset your bone marrow altogether and because you don't want any of those bad boys hanging around. So while you're waiting for your system to rebuild, you're vulnerable to everything. But mostly you're vulnerable to bugs that live inside all of us all the time that our immunities just handle for us every day. Thanks immunities!
In the midst of this massive life change, we had to make a massive decision. We had to decide what my cure was going to be. For most people, this is not a conversation. It's typically obvious and there's very little discussion. My AML was an intermediate case. And the doctors couldn't ethically dictate a transplant because a transplant can kill you. The thing is, if it works, your relapse risk is much lower. And never before had I wished more that I'd gone to medical school. My lovely doctor Marty Tallman said, "If you were my wife or daughter I'd tell you to do the transplant". And as we went on to get five more opinions there was no consensus. Three for transplant three for chemo. We were a mess. Ultimately I followed the voice that came to me while I sat quietly and just tried to clear my mind. It said, "Do the chemo, it will save your life."
So I did the chemo. My induction was followed by 5 more rounds of chemotherapy, each, a one week stay in the hospital. And always sadly followed up by some sort of an emergency stay because something somehow will always inevitably go wrong when you don't have an immune system. It could be pneumonia, a cold, bone pain. Anything. But the chemo worked and a year later, we were off to England. And then a year later, I relapsed.
I have now entered the AML world in London and I have now done even more chemo which has put me into remission again and I am headed toward transplant. After a meeting last week with the transplant nurses, I got a clear idea of the process I'm embarking on. The way a transplant works is magical and gives me chills. The magic begins (sounds very Disney) with my donor. Strictly a good human being. Being a good person is not magic, but when good people do good things, it is. And I'm referring to all the people on the Bone Marrow Registry all around the world. And after they've searched through these 15 million Registry members, this person and I match. We have 10 proteins that are exactly the same. This is not common for unrelated people. In fact, even for siblings, there's no guarantee. Plus, this person is available, healthy, still willing to donate since the day they registered, and they are going to save my life. So, as I said, this is not light stuff.
If you are just coming to this story, here's a little bit of background. In 2009 at the age of 46, I was completely blindsided by a cancer diagnosis. My family was living in Chicago and getting ready to relocate to London, England. I had a 3-year-old son, a 9-year-old son, and a 14-year-old marriage. Busy with little ones, I went to my OB for some check-ups before we moved because I had no idea how quickly I'd be finding a doctor for myself in London. I was fit, a yoga teacher and ate extremely healthfully.
I then got a call from my OB saying the lab screwed up and I should come do my bloodwork again. So I did. And apparently, the lab did not screw up. My white blood cells were crap. The doctor referred me to a hematologist at Northwestern Memorial Hospital who gave me an appoint two months out. I said, "Are you sure it's ok to wait that long?" He said, "Sure! Go enjoy your summer." So I did. I did not have a single symptom. Not one. Unless you consider getting breathless while you're pushing a stroller with a three-year-old in it up around the hills of Presido Park a symptom. Which I didn't.
Scroll forward two months later on a Friday, they retake my blood, give me a bone marrow biopsy and diagnose me with AML. So on the following Monday, instead of going to London to look at housing, I'm packing a bag to go into the hospital for six weeks for an induction round of chemotherapy that we all hope will put me in remission. The brakes on life had just been applied. All our lives. My family and my friends.
The tears and fears and shock and the outpouring of love were all overwhelming. I was forced to take myself and my health very seriously. I was forced to ask for a lot of help. And I had to watch myself go from highly functioning to highly dependant in a minute. My family went from excited about an adventurous move to paralyzing horror in just over a weekend. It was head spinning.
Induction for me included three different chemotherapies, some slowly dripped into me, some injected, and one an ungodly color red. After six weeks inside a hospital during the most gorgeous Chicago Autumn weather I ever stared at through a window, we found out I was in remission. These six weeks included an emergency operation for appendicitis while having no immune system and a full understanding of what exactly being neutropenic is. Chemotherapy for AML completely blows out your immune system. It has to. It's trying to reset your bone marrow altogether and because you don't want any of those bad boys hanging around. So while you're waiting for your system to rebuild, you're vulnerable to everything. But mostly you're vulnerable to bugs that live inside all of us all the time that our immunities just handle for us every day. Thanks immunities!
In the midst of this massive life change, we had to make a massive decision. We had to decide what my cure was going to be. For most people, this is not a conversation. It's typically obvious and there's very little discussion. My AML was an intermediate case. And the doctors couldn't ethically dictate a transplant because a transplant can kill you. The thing is, if it works, your relapse risk is much lower. And never before had I wished more that I'd gone to medical school. My lovely doctor Marty Tallman said, "If you were my wife or daughter I'd tell you to do the transplant". And as we went on to get five more opinions there was no consensus. Three for transplant three for chemo. We were a mess. Ultimately I followed the voice that came to me while I sat quietly and just tried to clear my mind. It said, "Do the chemo, it will save your life."
So I did the chemo. My induction was followed by 5 more rounds of chemotherapy, each, a one week stay in the hospital. And always sadly followed up by some sort of an emergency stay because something somehow will always inevitably go wrong when you don't have an immune system. It could be pneumonia, a cold, bone pain. Anything. But the chemo worked and a year later, we were off to England. And then a year later, I relapsed.
I have now entered the AML world in London and I have now done even more chemo which has put me into remission again and I am headed toward transplant. After a meeting last week with the transplant nurses, I got a clear idea of the process I'm embarking on. The way a transplant works is magical and gives me chills. The magic begins (sounds very Disney) with my donor. Strictly a good human being. Being a good person is not magic, but when good people do good things, it is. And I'm referring to all the people on the Bone Marrow Registry all around the world. And after they've searched through these 15 million Registry members, this person and I match. We have 10 proteins that are exactly the same. This is not common for unrelated people. In fact, even for siblings, there's no guarantee. Plus, this person is available, healthy, still willing to donate since the day they registered, and they are going to save my life. So, as I said, this is not light stuff.
In the transplant meeting, I learned that the first 100 days after the transplant are the most fragile. So, that is how I came to name this blog. It came to me when Ari, my five-year-old, standing on the edge of the love seat, toes gripping the arm, found his balance, arms outspread, glowing flashlight in one hand, took a giant leap toward the couch yelling "To infinity and beyond!"
So, to 100 days and beyond for me. Right now 100 days feel long. And worrisome. And includes a long dark London winter. And stretches over Thanksgiving and Christmas and New Years. And it's all unknown to me. I figure the best thing I can do is give myself something to do. So, maybe, one day, when I'm way past 100 days, and I meet another person who's about the have a transplant, I can be all cool and say, "Hey, you should check out my blog. It really helped me. Maybe blogging might help you too."
Welcome to my blog. I hope you join me here often, because so far, being joined by friends and family, community and professionals, has been my absolute saving grace. Thanks for reading.
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