… and, Breathe

November 18. Four years ago today we got the news that we’d been waiting for. The molecular scan of my latest bone marrow biopsy showed I was in molecular remission. It was a big deal. My honey gave me a necklace with the date, a heart, and an inscription that included, among other things, the word, “breathe”.

I haven’t talked much about my experience with Acute Promyelocytic Leukemia. When it happened I was so sick I basically had a near zero count for neutrophils, white blood cells, and platelets. I was so sick they moved me by ambulance from the urgent care to the hospital because they said if I’d gotten in a car accident at that point, or even had an impact at all, I would die because my blood wouldn’t clot. The first thing they did when they got me to the oncology unit at the hospital that night was to give me a transfusion. It was the first of many. I went into the hospital that first time on June 1 and was there until July 1. I would go back in for a week later that July for my second round of chemo, then again for a week in August for round three, and again for a week in September, before I was even supposed to get my last round, because I’d developed what’s called a neutropenic fever. My counts were so low, from the chemo, that I’d somehow gotten an infection that my body couldn’t fight off. My temp passed the holy grail of 102 and the oncology nurses said, yep, get thyself into the hospital. I was there for a week that time, pumped with antibiotics and fluids until my fever broke and my counts went up enough for them to send me home. My last round of chemo, which was two pushes on two consecutive days (by far the shortest round I had since the others were four or five days), ended up being outpatient (I was excited by this as before then the nurses at the infusion center couldn’t push the kind of chemo I was on because it was considered too dangerous. Somehow, near the end of my chemotherapy, they’d managed to get that rule changed which was great for me as I was able to just go in, get the last two pushes, and leave… yes, it was more complicated than that, but outpatient chemo was way better than days in the hospital). My last push was actually on my 45th birthday. Crazy, but true. I’d agreed to that because I didn’t want to delay it at all. I wanted to get it done, which had pretty much been my attitude all along. Let’s do what we have to do, let’s go, let’s get it done. In fact, when the doctor came into my hospital room the third day of my first stay and was there to tell us (my honey, my mom, and my brother, Kev, were there with me) I had APL my first reaction was OK, what do we do about it. What’s next. I was weak as hell, bruised like you wouldn’t believe because I had hardly any platelets and had just had a bone marrow biopsy and IV’s put in, but I was determined. Let’s do everything we can, let’s get started, let’s go.

Pacific

I have talked a bit, on and off, about the details of what I went through, answering questions people have had, telling my story. What I’ve only talked a little about though, are the feelings. The determination, the fear, the sadness at the thought of leaving K alone, of leaving my Mom, of leaving family and friends, and as crazy as it sounds, of the thought of not being there for our pups when it was their time to go. Strange thought, but I’m supposed to be the one to hold them when that time comes (hopefully a long time from now), and I couldn’t bear the thought of not being there for them, of not being able to tell them I loved them. Weird huh? A person thinks strange things when there’s a good possibility they could die.

The nurses and doctors at the hospital that first time, and every time actually, never pulled punches with me. I appreciated that. They told me what was what in an upfront and matter of fact way. They told me I could die. They told me that the first month would be the hardest, and possibly most lethal, and that if I made it through that first month I might even be able to be cured. Crazy. The most deadly and most curable leukemia. Great. What a juxtaposition. They were honest, and so I knew I could die. I knew that first month would be especially hard. I was right.

At first, after a few transfusions (which made me feel so much better I would ask if I could have another… too funny… what a vampire) and being given other things to bolster me, I felt better than I had in a while. A little more energy. It was fleeting, and came right after a transfusion, but still, I’d feel a little better for a couple of days. Even as I started that first round of chemo I felt pretty good, all things considered. Granted, pretty good for me at that stage was still not great. I had no energy and could hardly walk to the bathroom without having to stop and rest after a couple of steps, but I felt good in that context. The nurses said I should be getting sicker, from the chemo. At first, I didn’t. Then, I spiked a fever, out of the blue, and was put on antibiotics. A lot of antibiotics. And then, finally, all hell broke loose. I was allergic to one kind they gave me (I was on more than one) and reacted to it. I don’t really remember much of those two weeks of craziness, thank goodness. It’s all pretty fuzzy. I remember not being able to get to the bathroom without a lot of help, I remember throwing up and having diarrhea all at the same time and all in my bed, which then the nursing staff had to clean up (this might have embarrassed me, but somehow didn’t… they were so gracious about it), I remember bags of clothes being sent home with my Mom or my brother so they could wash my soiled shorts and t-shirts (I was wearing my stuff, not hospital gowns) and I felt bad they had to do that. I remember at some point the medical staff were worried about my something or other (at differing points they did extra tests on my heart, my lungs, and who knows what else, I don’t remember it all) and I was supposed to drink all of this cranberry juice that had some liquid in it that they needed in me before they wheeled me down for… uh, I think that one was a heart test? I don’t know. Anyway, I was supposed to drink all this juice and I couldn’t do it. K was there, trying to help me do it, to coax me to do it, and I was resistant. I got some down, then threw up some, then got more down. It was a terrible process. Finally they said they thought I’d gotten enough in me. It was awful. I remember I didn’t want to shower either, it was too hard, and I couldn’t do it on my own (my honey basically had to get me in there and wash me every time as I couldn’t stand up, I used a shower seat, and I could barely raise my arms). The nurses said I had to do it because I had no immune system and I could end up getting an infection from my own body if I didn’t wash often enough. Pretty scary to think you might not even be able to fight off the normal bacteria on your own body, but there I was. I remember the difficult time they had putting in my pic line and then the infection I got in it a couple of weeks later that resulted in fevers and ultimately having it removed. I remember having special protocols for my room, people couldn’t come in unless they were free of all possible colds and hadn’t been in contact with anyone who might have had a cold, and then sometimes they had to be masked to even come in. Masks became familiar to me. Later, after I was home and then had to go into the clinic or back to the hospital I would have to wear masks everywhere so that my compromised system would be as protected as I could make it. Doctors orders. They weren’t messing around.

So that first month, terrible. Scary. Muddled in my head. As I said, I don’t remember much of it. Unfortunately, my honey does. When people talk about how their loved ones never left their side, well, that’s my honey. She stayed with me, never left the hospital except for one night (when I finally convinced her to take one night off, take a break, go see and love on the puppies, breathe, take a shower, sleep in her own bed… she wouldn’t agree to it unless my Mom agreed to stay with me that one night, which of course Mom did) in the whole of that month. My hospital room had a little twin sized window seat meant to be big enough for someone to sleep on. My mom brought in a twin sized air mattress for K and the hospital staff gave her linens and my honey lived there, with me. She couldn’t use the bathroom in my room because it was too dangerous for her with the chemo circulating through and then coming out of my body, so she had to go down the hall. She got a Verizon mobile modem and worked from the hospital, each time I went in. I don’t know how she managed to both rule the world from the hospital and still take such good care of me, but she did. She held me up, literally, more times than I can count, and urged me to take the myriad of pills I didn’t want to take, and coaxed me into eating a bit of something, and talked me into showering and into doing much-needed laps around the oncology unit the nurses said I needed to do when I was starting to get my strength back, and bought me a new laptop so I could stay connected with things outside of the hospital, and communicated with friends and family outside of the hospital because I couldn’t bring myself to do it, and she held me. She held me up, held onto me, she never let me go. I relied on her so much, during not just that and the following hospital stays, but in between, when I became afraid to leave our house because it was too hard and too scary and too everything and she would urge me on. She protected me and saved me and helped me and nudged me and loved me. She loved me. She loved me more than I could have ever imagined, and that love of hers, strong, and unending, and selfless, it saved me. When the panic attacks and major anxiety started and I would feel like I couldn’t breathe and couldn’t move and that just the simple act of leaving our house filled me with so much fear and anxiety and scared the crap out of me she could talk me off the ledge, help to get my nerves under control, help to keep me moving forward toward healing and health and a day when life would return to normal. The staff at the hospital kept telling me how great my attitude was, that I smiled all the time, even though I was going through something so hard, and that I was always gracious and nice about everything that was going on. I guess I was, but I could only be that way because my honey had me. It’s what she said to me, what she still says to me… I got you. She did. She was my rock, the foundation that did not, and will not, ever crumble. The hospital staff also kept mentioning what a great relationship we had, how well we loved each other, how good we treated each other. We did, she did. She does. She has me.

Life was insular. When something like this happens it’s almost exactly like when, in old movies, the frame fades in toward the center, first to a pinpoint, then to black. Everything outside of hospital visits and treatments and medications and test scares and transfusions and antibiotics and weird side effects and leukemia fades away. Life becomes small and exact and finite. You live in a place of fear and hope and anxiety and holding your breath. There’s a lot of holding your breath. You live for the blood tests and the results and fear them at the same time. You hope the treatment is working, you hope you live. You want to live. It becomes the focus of your existence. Living.

Somehow, through the course of my time in and out of hospitals and clinics, I managed to maintain myself and my attitude pretty well, to the outside world anyway. It’s strange that after the first major chemotherapy and that first hospital stay I would then get anxiety. After. After I was done with the first part of my treatment. It started to creep in when I went home that first time. I was scared to be without my safety net. Scared to be on our own, so far away from help if I needed it. I was scared of a lot of things. I’d been so so sick, been so dependent on everyone at the hospital, I was so unsure of trying to do it all without them. So the anxiety came and it crept up in intensity as I went along, through the next rounds of chemo. I’d actually be relieved, in a love-hate kind of way, when I had to go back into the hospital for the next round as I’d know I would be there, where it was safe. Then, when after the rounds of major chemotherapy were done, I entered maintenance, which is called consolidation, and the anxiety started to increase even more. Now, looking back, I think I know why. When something like this happens to you it’s sudden. Sure, I didn’t feel very good before diagnosis, I had no energy, felt under the weather, but I never thought, wow… I’m tired, I must have a touch of leukemia. You think oh, I must have a cold. So when you have the test and the doctor comes in and says OK, your blood is chock full of APL, you’re surprised. Not totally, since by that point you know you’re in the oncology unit and you know something is definitely not right inside of you, but it’s still a total surprise. One minute you’re living life… working, playing, waiting for the birth of your first grandchild, enjoying everything, and the next you’re getting a transfusion and chemo and you don’t know if you’re going to make it through the month. Weird. Sudden. What it does, or at least what it did to me, was make me acutely aware that life can be great one minute, and something terrible can happen in the next instant. Nothing is guaranteed. Which means that it’s all sort of random and unpredictable. That scared me, still scares me. A lot.

I’ve spent the last four years hopeful and afraid all at the same time. In the last couple of years you can throw in a good dose of anger to that mix. I’ve had some periods of time when I’ve been really angry. Angry this happened, depressed as well. It really wasn’t just this experience, it’s been a lot of things (K’s terrible illness before mine and all the deaths I’ve had in my family), but my illness certainly contributed mightily to the feelings of hopelessness in the face of odds that at times seem to be stacked against us.

Don’t get me wrong though, I’m not walking around angry and depressed all the time. Those feelings, the blasts in the face I’ve had of them on and off, are finally starting to subside some. It’s not who I was before all this, and certainly doesn’t define me now. It’s just that those feelings have been a part of my life in a bigger way than they were before leukemia. I still get bouts of fear and depression. I still get angry over things that are silly and insignificant, but that for some reason trigger a reaction in me. I’m working through all of that. Working through the new impatience I feel when I’m doing a project and something goes wrong. I don’t much like it when things go wrong now, even in a little way. But, I’m getting through it. I think I might be, finally, coming back to myself a little. I think maybe the haze that’s been there the last four years might be lifting. And yes, my honey has had a major part in helping me through it, in getting me back to myself. She’s also been patient with me. Patient when Mr. Hyde comes for a visit and Dr. Jekyll completely leaves the room.

You hear stories from people who’ve gone through traumatic experiences, near death experiences, who say that afterward they are left with a wonderful sense of possibility and living life to the fullest. That wasn’t me. Certainly not initially that is. My illness did give me an overwhelming sense of appreciation and gratitude for the people in my life, family and friends, who I love and who love me, though to be honest I had a pretty good sense of that already. But, it magnified it, which is a good thing. But I’m not one of those people who will tell you that they are grateful for their experience because it woke something up in them. To that I say pshaw. At least as far as I’m concerned. It didn’t make me free, it scared the crap out of me. It didn’t wake me up, I was already awake. I’m definitely not one of those people who now, after having this nearer-to-death-than-I-would’ve-liked experience, goes sky diving and takes more risks. I don’t think anything could make me want to sky dive, not the thought of cheating death or the promise of a million dollars. I keep waiting for the miraculous feeling of “grabbing-hold-of-life”, but it hasn’t come yet. I sort of had it before. I mean, as I said, I have always appreciated what I’ve had in the people in my life, I’ve always known that’s where the magic lies, and I’ve always thought of myself as lucky in that regard. Leukemia did nothing to engender those feelings in me, it just made me scared of losing them.

Now, as I continue to come out of the haze that’s been the last four years, I’ve chosen another path with regards to how I look at all of this. I’ve chosen to look at it like any other thing in my life that has been hard or unpleasant. I got through it. I put my head down, did what was necessary, and plowed through. My own body betrayed me. It took me down the rabbit hole and I clawed my way out of it (with some fantastic help of course) and somehow I must forgive it for doing that terrible injustice to me. I must say to it, yes, you threw me a big curve ball, but sometimes that’s how things go. Sometimes unexpected things are going to happen and the only choice is to move forward. I have to put one foot in front of the other and I have to keep moving. Because when I plow through, there are always beautiful things waiting for me on the other side of it. Always.

So this is how it is for me, this new gloriously strange life. Life is unexpected, it’s challenging, it’s scary, and not guaranteed. It’s also joyous and beautiful and sacred and luminous and spectacularly, singularly, amazing. It is all of those things. Those and more. I have to take the good and the bad and all the gray in between. Sometimes that means living through the fear and the pain and the awful, and sometimes it means celebrating and laughing and being joyous and going balls out. Under whatever circumstance, it means living. Always. Living. And luckily, fantastically, I am miraculously alive. This experience does not define me, no experience can. We are defined by how we live over the long haul, how we love and are loved in return.

Today, four years later, I’ve moved on and am moving forward, small steps at a time. I’m laughing, I’m awed, I’m sad, I’m joyous, I’m angry, I’m elated, I’m overcome, I’m held captive by my past one minute and free of it the next. That freedom though, ah, that freedom is so very sweet when it comes. I love deeply, and I am loved just as deeply in return. And when the fear comes, when it grips my heart and things become just a bit uncertain, I feel my honey, gently holding me and whispering in my ear, just breathe. And I do.

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