Eight years ago today a doctor walked into my hospital room and told me I had leukemia.
Since then I’ve periodically asked a question of myself. Not, as you might expect, why me, or even just why. There is no why. It was random, not predictable, and as far as we know not preventable. It just was. So the question isn’t why, but who. Who was I then, am I the same person now, what did I learn from the experience?
I’ve written here about my philosophy of life a bit… which is basically kindness is key, our love for the people we love and who love us is all that really matters, find joy in the every day, and don’t lose hope about the things that matter to you. But as this day rolls around every year I find myself doing a bit of an assessment.
I believe in forgiveness, in kindness, joy, hope, and love. But, I’m not always the best at those things. And on this day I find myself trying to remind myself who I am. I find myself trying to forgive myself for the ways I know I’ve hurt people, which doesn’t let me off the hook for those slights, but it does let me employ one of my strongly held beliefs which is that each of us is doing the best we know how at the moment. Sometimes our efforts aren’t that great, and we don’t handle things well, but at the moment we are only doing what we can with what we have. It still means we have to try and do better, be better. We owe our people that. But, we also can’t continually beat ourselves up for the things we’ve done. This is where apologizing comes in. Sincere apology. We admit what we’ve done, we feel it in our bones, the ways we’ve hurt someone, and then we say we’re sorry for it. The apology is freeing for both people. So I ask, have I apologized enough and meant it. Have I forgiven others, have I forgiven myself?
Kindness. Have I been kind? To my people, to strangers, to myself. Am I moving through the world as a kind person? Do I say thank you, look people in the eyes, empathize, treat people with respect, watch out for their feelings, simply honor people as the beautiful human beings they are? Am I kind to myself? I hope so, I hope I do all of these things, but I know the answer is, I don’t always. So I need to be more kind. We can always be kinder. I think there’s always another level of kindness to strive for. I think the key for me is to be aware, to be present with people. If I am, I’m kinder.
Joy. It’s easy to get discouraged in life. About our place in it, circumstances we find ourselves in, the state of the world. The enemy of joy is fear. So the key is to not be fearful. But, that’s a tough one. Having gone through this whole life-threatening experience I find myself afraid of the random and unknown. Afraid of what could happen, suddenly, without warning. This fear has no face or name or even bearing on what’s actually happening in my life at the time. It just comes with large amounts of anxiety. And when it comes it eats my joy whole. Like a kipper snack. So I find myself searching for ways to lessen the fear and find the joy. I’m innately a silly, joyful person. I’m a dork. I can find joy in the smallest things when I’m not afraid. So I’ve spent some time working on and continue to work on trying to be present in the small moments of life, which I feel is where joy lives. In smiles and sunsets and dogs and wind in the trees and whispered secrets from grandchildren and laughs over nothing at all. I try to remind myself to be present. Nothing is promised to us, which certainly includes time, so we have to live now. Be alive now. Be joyous now. This is a tough one, but I’m trying. The wind chimes are going strong right now on the front porch, and the sound is magical, and there is joy in that.
Hope. It’s tough to be hopeful when all you see is the stuff that’s not working out. But as I’m taking a look this year I find myself reminding myself that life is perception. We see what we want. Which brings me to one of my favorite quotes of all time. It comes from the movie, The Abyss, “We all see what we want to see. Coffey looks and he sees Russians. He sees hate and fear. You have to look with better eyes than that.” At the time the film was made the cold war was still in full swing, so the Russians were the bad guys. But the point isn’t that part of the quote. The point is the essence of it which to me means we see what we want to see, which is frequently driven by our personal fears, and we have to look with better eyes. So, I can either see the world from a place of love and forgiveness and hope, or I can see fear, I can see enemies. I try to come from a place of seeing people as friendly, as human, as trying. Again, I don’t always succeed in this, but when I do, hope springs and the world looks different somehow. Brighter, fuller, rich in color and possibility. It is hopeful.
Love. I believe in connection and responsibility to and for that connection. Life is about love. Who we love, who loves us. It’s about how we love. Do we say it? Do we show it? Do we let the people we love feel the love we have for them? For me, this brings gratitude into my life and makes me want to share that gratitude. To say how grateful I feel for the people and love in my life doesn’t even cover it. I am sometimes overwhelmed by the waves of it. Struck profoundly silent by the weight of all the love I know I have in my life. But, it’s sometimes too easy to see what we don’t have in life, what we think we’re missing. And in the muck of that, we sometimes forget to take stock of what we have, or even to recognize that it’s there. Who we have and what that means to us. Love is all around us. It’s all around me. So, as I go through this day I let that wave of gratitude for enormous and profound love wash over me. Hold me up. It did when I was sick. It’s what got me through. Even though I was semi-isolated when I was sick, I felt the love pouring into me. Lifting me up. Holding me. I felt it. And luckily, I feel it still. If I sit with it for a few moments I cry. Out of a gratitude so overwhelming it crushes me in all the right ways. That’s where I want to live, where I try to live. Even when things are tough, the love is there. I have it, and I try to give it back. We’re responsible for giving it back. For loving, and loving well.
Eight years. If I think of all the beautiful and strange and magical and messy things that have happened in my life in the last eight years I’m amazed and so moved by it all. It has definitely not all been easy, and there have definitely been sad and heart-breaking times, but there have also been so many moments of joy and laughter and love. And I guess maybe that’s the point of taking stock. Which is to say, it’s a messy thing, life. But it’s in the middle of all that mess we find love and hope, kindness, and joy. And I remind myself, isn’t that an amazing and beautiful thing?
Eight years. Eight years on top of the nearly 45 years before those.
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.
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.
It’s a rainy day in Central Illinois. It’s been rainy for a few days now. Unusual in our experience here. It reminds us of Oregon. Day after day of rain and rain and rain. It’s sort of nice actually.
Leaves are falling, and all over the ground. We’ve already picked up a few bags of them. The first of many. And yes, we’ve already talked to our lawn guy about maybe handling the leaves in the front yard, assuring him we planned on taking care of the leaves in the backyard. I’m sure he was relieved. I’m kidding. He’s a professional, don’t try this at home. We are very relieved. Last year we had around 100 bags of leaves. 100. That’s a lot of raking. I’m not sad even just a little bit about having someone help us out with that task. We do, however, need to take care of what is becoming a wet mess in the backyard. It’s supposed to dry up the next day or two and then there will be some raking in our future. I’m psychic like that.
It is beautiful out there though, if you ignore the rain and just look at the changing colors. Really getting gorgeous now. Maybe this weekend we can get out there and take some photos. Go to Homer or some such place. Take the cameras. Take the dogs. Have a day trip. It might be a fun thing to do after we, on Friday, take our trailer in for the season. Yes, Lily is going to the barn. Not actually a barn, this is a figurative barn with heat and loads of other trailers parked in it. She’ll be nice and tucked away for the winter. We’ll be sad to see her go, but glad she’s being well looked after. We have a big fondness for our travel trailer. It could border on unnatural.
My honey is making a meatloaf. Right now she’s mixing it up. We’re taking it to the kid’s house tonight. Meatloaf, sweet potatoes, peas. Yum. I’m hungry right now, I didn’t each lunch, so almost anything would sound good. My honey’s meatloaf though, it’s tasty.
The dogs are happy. We just got a new box of Greenies. They are fans of the Greenie. We spoil them, that’s a good thing. They totally deserve to be spoiled.
I can’t believe we leave for Florida next week. Crazy. Seems like we were planning this so long ago and now it’s here. Family reunion time. K’s family. It will be great to see everyone. We’re going to Orlando. Dog/house sitter arranged, car rentals arranged, rooms arranged. We’ll be packing shorts, probably our last chance to wear them this year. We’ve been wearing jeans for a week now at home, too cold and wet now for shorts in Illinois.
It’s Thursday now….
We just got back from a regular six month appointment with my oncologist. I used to see him every three months (for two years now, since getting into the whole post treatment phase) with accompanying blood work, then every six months though I still had blood draws every three months. Today he told me that he’s going to work it so that I see him once a year, and I’ll see my regular doc for a physical once a year. He wants to coordinate so that I’m seeing one of them every six months, with blood work. Meaning I’m now only going to get blood work every six months. I will see him again in March, then a physical with my regular doc in September, and then him again in March, and on and on. This is big news for me. Great news for me. He said my blood work was fantastic. He said I was doing really well. I feel high right now. Leukemia, and the threat of it, has been a part of my life since June 1, 2010, the day I went into the hospital for the first time. I’m much better now about leading a normal life and trying not to worry about it, but it’s still there sometimes, the fear, lurking. Every time I get another step or two away from it I feel freer somehow. Less encumbered by thoughts of it. More like my self, the self before it every happened to me. It’s a good day.
Our life is amazing. Simple, lovely, wonderful, and joyously alive. Every bit of it. Every small tiny bit.
Ever find yourself sitting in the garage after you’ve pulled in, unwilling to get out of the car because the song that’s playing is making you feel something?
That was me just now, and damn, it is great to be alive.
Every once in awhile I find myself, because of a song, or a video, or a thought, or something my honey or the grandsons or the dogs do, just loving being alive. And not just loving it, but being so overwhelmingly grateful that I’m here, enjoying whatever it is that’s making me feel so much at the moment, I cry.
There’s a story behind this. Yeah, yeah, isn’t there always?
The story is a tad long, but it’s mine, and today I’ve decided to tell it. Here goes…
At the end of 2009, November it was, life was moving along just fine. Work, home, friends, family, dogs… a good life. Then, unexpectedly and out out of the blue, my honey got sick. Not just sick, but really sick. Sick as in we went to urgent care, they said oh, you have pneumonia, and here … have a shot in your bum, and go home. Only to be called by an emergency room doctor a couple of hours later who, after reviewing the blood work, told me to get her in immediately. He even told me all the other hospitals along my route in case she lost consciousness. Seems she was sicker than we were originally told. She went into the cardiac critical care unit. One of her lungs was completely full and the other was half full of stuff. This was effecting her heart as well, hence the cardiac critical care unit. She was delirious, literally. I didn’t know what she was saying half the time and she didn’t know much of what was going on. The nurses repeatedly told me she was the sickest person on that unit. She was there in critical condition for a week, before they were able to downgrade her and then finally send her home. I stayed with her at the hospital, never leaving. How could I? She’s my everything. It was the worst week of my life. Which, after you hear the rest of the story will mean even more than it does right now.
Fast forward to May 2010, six months after her illness, and I started not feeling that great. Looking back now I wasn’t feeling great for a little while, but by the end of May 2010 I really wasn’t feeling good. On June 1st we had yet another fateful trip to urgent care. Some blood work results, and they sent me directly from urgent care to the hospital, by ambulance. Seems I was so sick by then that if I’d gotten in a car accident on the way to the hospital from urgent care I would’ve bled to death. The EMTs took me directly to the oncology unit. A couple of transfusions, a bone marrow biopsy (my first of three) with the results a couple of days later, and what we feared had come true. I had leukemia. I was told that it was the deadliest form, but if I lived through the first month, it was also the kind that was curable. Scary, but… good? Yes. Good. If I lived, I thought, I might live.
I spent a month in the hospital… multiple transfusions, multiple tests, and my first round of major chemotherapy. I say first because though I got out of the hospital a month to the day that I went in, I had to go back in later in July for a second round. I was in for a week that time. Then again in August, for another round and another week. And then, in September, I got to do my last round, which was only two pushes (the last of which was on my birthday), outpatient. Unfortunately I ended up getting a neutropenic fever after that round and ended up in the hospital again, for another week, anyway.
By October I was done with the major chemo and starting on maintenance treatment. Which would last for two years and entailed me taking rounds of ATRA (the thing I started right in the beginning that really saved my life), low dose chemo in the form of pills, and a shot, every week. I had to go into the infusion center every week for that shot. It was my life, our lives, for two years. My first, and diagnosing, oncologist, who was an amazing guy, told me that the maintenance treatment was akin to sweeping the floor. Done to make sure we got anything that could be lurking. I was all for it. My attitude, during the whole thing, was let’s go. Whatever we have to do, let’s do it.
In November, of that first year, I had the third of my bone marrow biopsies. They did a molecular scan and I was cancer free. No aberrant cells found at all. Yay! I cried, my honey cried, my Mom cried. I think I might have breathed deeply for the first time since the ordeal started.
Here I am, three and half years later, no longer on maintenance treatment, still getting blood work and seeing an oncologist every three months. Leukemia free. I will do this for another year or so before, once again, my protocol will change and I will only have to go once every six months, and then, at some point, maybe once a year. Who knows. I’m OK with whatever the schedule is.
I chronicled part of this journey here, on this blog. Not posting during that initial time in the hospital, except maybe right in the first few days, but posting here and there during the months that followed. I posted about things that happened, but I never really posted about how I felt.
Damn, I’m so glad to be alive.
I was, as maybe you can or can’t imagine, scared as hell. Scared doesn’t even cut it really. I was terrified. When you hear the words, “your body is chalk full of Acute Promyelocytic Leukemia” everything sort of freezes. Slow motion starts and you look at your honey and your Mom and your brother who are all there with you and they all start crying at once. You look back at the doctor and he’s looking at you, and you say something that seems like it comes from you, and from someone else all at the same time. You say, “OK, what do we do, let’s go”. I didn’t cry. I didn’t cry at all. Everyone else was crying, but I just felt this thing come alive in me. Will. An amazingly strong will. It was there, nuzzled right up against the terror. I would be so determined and yet I kept thinking about things like, oh god, if I die my honey will be alone, my Mom will lose a child (which is unthinkable), my brother will lose his sister, that my grandson won’t know me, that my honey won’t have any more adventures with me, that my dogs won’t understand if I don’t come home. I was so worried about everyone else. Interesting. I kept rehearsing the speech I would have with my Mom if it looked like I was going to take a bad turn. The speech where I tell her to be with my honey, to help her through losing me, to comfort each other. I wanted to live, I was fighting to live, but I also had to prepare myself mentally for the other thing that could happen.
I went through some awful things while I was sick. After the first round of chemo, while I was still in the hospital, I got so sick I don’t remember much, thank goodness. I had to be helped to the bathroom (by my honey or my mom), someone (my honey or my mom) had to shower me, I would throw up and have diarrhea at the same time which the nurses would have to clean up. During this time I also had to have a test (one of many), I don’t remember which one, and part of it was that I had to drink some stuff. I remember my honey, who spent only one night away from me during that entire time (working from the hospital, sleeping there, taking care of me) having to try and talk me into drinking it because I was getting so sick from it. I was sick anyway, and having to drink that stuff didn’t help. She convinced me and encouraged me to get enough of it down so I could take the test. She also had to talk me into taking my pills every day, and trying to eat, and taking a shower. She was my champion.
Everyone talks about the chemo, but no one talks about the other things… weird little side effects from basically having no immune system, like yeast that develops on parts of your body that you can’t get rid of, and other just as lovely things. I had a reaction to one of the transfusions and had to have a major dose of benadryl shot directly into me. I had neutropenic fevers followed by loads and loads of IV antibiotics (two at the same time), which didn’t help with the nausea. I had a pic line put in that was very difficult for them to get in and three weeks later an infection from that pic line which resulted in them having to take it out. I had ultrasounds because I had so much scar tissue in my veins in my arms after pushes and lines and blood draws and IVs that a couple of times they wanted to make sure I wasn’t clotting too much in there. I ended up at urgent once, during those first few months, because I got a hemorrhoid from all the laying and sitting, that started to bleed. Gross. But, so it went.
I think the worst of it though, ultimately was, and is, the anxiety. I’m a person who never had anxiety before all of this. I’m pretty laid back. Pretty care free and pretty full of joy. Anxiety was something unknown and foreign to me. But during this I developed anxiety. So much so that leaving the house, after I had been allowed to go home, was scary for me. My body would just react… feeling like I couldn’t breathe, heart pounding, panic. When I was neutropenic, which was a lot during those first months as every time I’d have a round of chemo my numbers would crash, I had to be so careful. When I was in the hospital the precautions for neutropenia were major. Gloves, masks on everyone who came in, no flowers in the room, no fresh veggies or fruits on my food tray (and if there was, even a sprig of parsley placed there accidentally, they had to remove it quickly from my room and get me a whole new tray), restricted visitation, basically creating a germ free zone. It wasn’t just that I might get sicker, it was that I could die. My body couldn’t fight anything off when I was neutropenic. An infection became life threatening, as did a cold. So I got anxious about a lot of things. When I was permitted to go home my honey had to remove all house plants from the house (there’s a fungus that can be in the soil that could kill me if I inhaled it), we couldn’t have fresh fruits or veggies, no one could see me if they had even been around someone who might have been sick. I was weak and tired and nauseous most of the time. And just when I’d start feeling better, just when the numbers would start to rise, I’d have to have another round of chemo. My life became very boxed in and small. Hospital for treatment, then home where leaving the house (I’d have to wear a mask when I was outside the house) was not worth it or even possible sometimes. I couldn’t drive, couldn’t do anything really. My honey didn’t even sleep in our bed during this time. She slept on that same air mattress she’d used in the hospital, next to our bed, with the dogs, who couldn’t sleep with me either. It’s not just that things were dangerous to me, I was dangerous to them. I was leaking poison out of my pours most of the time. No kisses, from my honey or the dogs, no using the same toilet even, because I was toxic. All of this created anxiety in me. I still get it actually. Less and less all the time, but I do. I have pills for it. I got them a lot in the hospital, and used them a lot during those months of chemotherapy. They help. And thank goodness for them. Sometimes my mind would go and go, worrying, and worrying. A loop of worry and fear and anxiety and sometimes, panic. As I said, I’m better now, but I don’t know how many times my honey has had to look me in the eye and say to me, “it’s OK my love, you aren’t sick anymore, there’s no leukemia in you… none”. And the rational me then sort of wakes up, comes to again, and knows it’s true.
And damn, it’s amazing to be alive.
I guess I’m recounting all of this because I never have before, and it’s time. Time for me to say it aloud, as aloud as this is. But I guess it’s also because all of this is the counter point to what I was feeling just a bit ago sitting in our garage after having come home from running some errands. Nothing big happened while I was out. I just went to the library and then to the coffee roasting house and then drove home, sipping some coffee and listening to music really loud in the car. It’s sort of gray outside today and the leaves are falling. But as I drove into the garage, and shut off the car, staying in there to listen to the rest of the song (Change by Rascal Flatts, for anyone who’s wondering) I was overwhelmed. Overwhelmed because the leaves are falling, and the dogs were barking in the house knowing I was home, and I knew my honey was in her office working, and earlier today we’d gone swimming with our grandson, and the music was so beautiful. I started to cry. Crying from a place of overwhelming happiness and a feeling that life is so big and wonderful, and so fully felt.
Damn, it’s so so good to be alive.
I am grateful and I’m humbled by the quality of my life.
The thing I learned from my honey’s illness, and then mine, was something I already kind of knew anyway, but it got reinforced big time. It’s something, a feeling, I wish everyone could feel and something I wish everyone could know, without having to go through something so major, so awful. It’s the surety of knowing that there’s nothing important in life save for the people we have in ours. That is, period the end, the only thing that matters. Stuff, problems, annoyances, possessions… none of it matters. Not really. The time we spend having adventures and experiences with the people we love and who love us, that’s what matters. That’s what you think of, what you fear you’ll miss, if you think you could die.
It’s so damn good to be alive because I have so many fantastic people in my life. People, and dogs that is. People I love to be with, who love to be with me. People who I miss when I don’t see them, who miss me right back. Dogs who love me unconditionally and bring me so much joy I can hardly stand it sometimes. People who I laugh with, and get angry at, and cry with, and am silly with. People I have adventures with. People. There is nothing more important than our relationships and the experiences we create together. It’s the journey we’re making, with each other, that matters. It’s what matters most to me.
I am so happy, so thankful, so grateful, and so overwhelmed to be alive. Life is so beautiful.
It’s taken three years, but I finally wrote the email I’ve been thinking about writing for a long long time. I finally said thank you.
I could reiterate here what I said, but I think I’ll just post the letter I wrote. If there are people out there in helping professions, know that you make a difference. Know those kind words, smiles, and care, mean so much to the people you are working with. I’m so very grateful.
A caveat… I used everyone’s real name in the actual email. I just didn’t want to use them here. This isn’t the most eloquent I’ve ever been, and reading it through I’d already change some things. I guess that’s probably because there really are no words adequate enough to convey the depth of my gratitude and emotion.
I’ve been wanting to write this email for some time. I’m sending it to you because you were always my go to contact person. No matter what the situation, you were there.
Today I had my 9 month post maintenance check up with my oncologist here in Illinois. Everything was great, blood work great, etc. Every time I go in I think to myself I should write to you, and hopefully if you can pass this on, to a few other people… Dr. B, the nurses and staff in the infusion area, that first doctor at urgent care, S and T in the lab, the ladies at the front desk, and anyone else who might have come in contact with me during my treatment.
In case you don’t remember… my name is Tam, my partner is K. I was diagnosed with Acute Promyelocytic Leukemia in June of 2010. I went into urgent care on June 1 and met a wonderful doctor, I think his name was EM, who treated me with such kindness and care, even taking a moment, as they were loading me into the ambulance, to come over, look me in the eye, and wish me good luck. He didn’t have to do that as he was moving on to other patients at urgent care, but he did. I entered the hospital, and if you could pass this on to them as well I’d be eternally grateful, had my first bone marrow biopsy and a transfusion on June 2, was diagnosed on June 3, and was there for a month, discharging on July 1 after a few more transfusions, tests, and my first round of major chemo. I went back into the hospital for a week in July and again for a week in August, both times for the next rounds of chemo, and then for a week in September when I ended up with a neutropenic fever. I did my last two pushes of chemo outpatient, on September 16 and 17 (I only remember the dates because my last push was on my 45th birthday), at the infusion center at Interstate. I then started on maintenance treatment in October 2010. Every week, for maintenance, I went in for blood draws and a weekly shot. I was also taking medications orally, but that was on my own. I spent a lot of time at the infusion center and in the lab. I continued treatment until I moved to Illinois in August 2011. I finished my second year of maintenance treatment here, using the same protocol Dr. B set up and I’d been following in Oregon. And as I said, I just had my quarterly visit with my Illinois oncologist. Basically the 9 month visit since completion of maintenance. I’m doing great. It’s been just about three years since it started. Amazing.
The reason I’m writing is because I want to say thank you. And in writing that I don’t think I’m fully expressing the level of gratitude I have for all the nurses, both in the hospital and the infusion center, you, the ladies in the lab, Dr. B, and the other staff including CNA’s, medical assistants, the people who delivered food to me at the hospital, the people who cleaned my room at the hospital, all the techs who performed one test or another on me, and probably countless others I’m forgetting. I get emotional when I think about this, and actually have tears running down my face right now. Not out of sadness, but from that deep sense of gratitude I mentioned earlier.
I know every day all of you go to work, then go home to your own lives and your own families. I know that you’re human so some days at work are harder than others because life is like that, and on top of that the work you do is also difficult. Dealing with people, every day, who are very sick and scared and hurting. It’s a huge burden to carry, yet I felt, every time I spoke to you, or Dr. B, or a nurse in the infusion center, the ladies in the lab, and on and on, that I was always heard. I found so much grace and hope and comfort in that. I was, time after time, so impressed with the treatment I received and with the humanity in which that treatment was delivered. And not only did you all treat me well, but you treated K well. She stayed with me the entire time I was in the hospital and everyone was always so warm and gracious to her. And then, after, when we were coming in to the infusion center, and every time you talked to her on the phone, she was treated with respect and care. All of that made, and still makes, a huge impact on my life. I am blessed to have met you Nancy, and blessed to have met Dr. B and all those lovely lovely nurses I came in contact with on this journey. I want you, and Dr. B, and all those others, to know how much I appreciate you, and them. I want you to know that just those little bits of kindness, bits you probably weren’t even aware you were giving and showing, made such a difference to me. I want you to know that I am so thankful to still be here, and more than that to be healthy and happy and leading a great life. I have the life I do because I was lucky enough to have all of you come into my life when you did. What you all do makes a huge difference. You might not realize this, it might not occur to you on a daily basis, but it does. It made a huge difference to me.
There aren’t enough words to express the feeling I have when I think of all of you. You will all, for the rest of my life, be in my heart. And the memory of what felt like warm hugs for my soul from all of you, through a little smile here or a little comment or laugh there, while I was going through something terrifying and horrible, will be with me forever. What you all do makes a difference, a huge difference, in people’s lives. I can’t say that enough. So when the day is hard, or bad, or long, please remember that there’s at least one person, two if you count K, who is out here thanking you, and wishing for all of you every good thing that can be imagined.
K and I still live in Illinois, though we miss Oregon very much, and are happily very involved in our grandchildren’s lives. We have two now, both boys. The youngest, Dominic, is just two months old, the oldest, Sebastian, nearly three, calls me Gamma Tam. Isn’t that the best?
Again, my best to you, and a wish for every good thing for you…. Tamra
I’m crying. I can’t seem to stop. I dry up for awhile, and then there they are again, tears falling down my face uncontrollably. I’m not sad… no, not at all. These are tears of joy. Tears from days, and weeks, sometimes hours, and two years and four months.
Wow. What should I do now. It hasn’t sunk in yet. I think the sinking in will take some time.
I had blood work yesterday, it was great, then an appointment with my oncologist this morning. The appointment was fast. He looked at my blood work, said it was fantastic, listened to me breathe a bit, answered our questions, and then said to me go live a normal life. A normal life. Normal. Life.
I’m overwhelmed. Two years and four months, to the day, since diagnosis. 15 pushes of hard core chemo, three bone marrow biopsies, more blood work than I can count, pic line, pic line removal, tests on my heart, x-rays on my lungs, more pills of ATRA than I can count, trips to the urgent care, somewhere around 45 days in the hospital all together, 1065 pills of 6MP, 102 shots, and all the other thousand and one things that’ve gone on over the last two years and four months. Every week, for two years, every week… every Wednesday at 10:00 am.
Well now I guess I go live a normal life… and here come the tears again. They are welcome, and so is the joy the accompanies them. Live a normal life. Normal. Life. That sounds really good to me.
Here I am, last cycle, cycle 12. I met with my oncologist in Illinois last Tuesday before we left for Oregon to have my every three month check up. I asked if I could start the ATRA after we got to Oregon, meaning today, instead of last week. Didn’t really want to get the whole ATRA headache while we were road tripping. Dr. Graham was cool with that. So this morning I took my first dose. I can’t believe this is my last round of it. Today I meet with an Oregon oncologist who will be supervising my care while I’m here. Not the same doc I had before as our insurance is changed, but we have the appointment all set up with this new guy and they are planning on giving me my shot afterward. We’ll see what the dealio will be here, probably the same as what I’ve had in Illinois.
Here it is, June 1. I am amazed this much time has passed. Two years. Two.
Two years ago today I was a sick puppy and ventured into the urgent care, on the insistence of my honey and of the nurse who I’d talked to on the phone. Urgent care to hospital via ambulance a few hours later and the adventure began.
I can’t believe it’s been two years. Wow. I’m blessed, lucky, and so very grateful for all the men and women who have, over the course of the last two years, provided me with amazing care. From urgent care numerous times to hospital numerous times to infusion centers and labs and doctor’s offices I have seen the best of what humanity has to offer. These countless people treated me and continue to with such respect and gentle understanding I am humbled. From Oregon to Illinois I’ve been lucky to know them all. The genuine way they listen and treat is phenomenal. I wish I could hug each one and let them know how much they have meant and continue to mean to me. Having told them and continuing to tell them thank you just doesn’t seem like enough.
Two years. This is a great grand life I’m living. If this experience has taught me nothing else it is that a person should constantly, to the point of over doing it, express how much they care for and love the people around them. They are what makes our life fantastic and lovely. Nothing else. So to the universe of people out there, old and new, who I know and love and who have shown such great support and love throughout not just this experience but my life, I love each and every one of you.
I am afraid. Not always, but I am. I am trying not to be.
I capture moments of joy, soaking them up, appreciating them with every part of my being. My honey doing something silly and wonderful and full of joy, which she does many times a day. Her smile. Sebastian’s laugh or new word. The gorgeous setting of the sun. The pups loving on me in the way only they can. Wind in the trees. Music stirring my soul. A film I love. Hugs from family. A visit from my Mom. Art that aches to express itself and somehow understands me. Kindness. Moments of love from family and friends. Hope.
And then I have those dark moments. Afraid. Scared. Taken with a near paralyzing fear that maybe this time the blood results won’t be good. Then they are, and I feel as though I can take another breath. This is how it goes.
To be brutally honest I’m sitting here with tears streaming down my face. Happy. Yes, it’s that every other week Tuesday and I just got my results. They were really good. Of course they were, I don’t have leukemia anymore. But…
It’s that word, that awful word… but. I fear. I have fear. I am afraid. Not all the time anymore, like I once was, but I am still afraid.
Sometimes I look at people I don’t know, which I did a lot this last weekend at Ebert Fest. I look at the crowd, overhear conversations, get a peek into people’s lives. I hear about work, and school, and giving, and politics, and passionate causes, and daily life. And sometimes I think to myself, of course without really knowing any of these people, wow… you have no idea what you have. You are walking around asleep. And trust me when I say I don’t mean this as a derogatory thing. I envy people who are sometimes asleep, or better described I guess as sleep walking. They don’t know how fast life can change, and does.
Karen and I were talking the other day about this very thing. How sometimes people are so caught up in things, stuff, the daily minutia of living, they forget. They forget what it’s really about. It is never about stuff, things, small arguments, disagreements, anger, what you have or don’t, what you want or don’t. It’s about love and beauty. Period. Which I know I’ve talked about before here in this blog of mine.
Somehow I wish I could shout out to the world for people to wake up. Wake to love and beauty and joy and each other. Wake to sameness and togetherness and the simple joy that we are here in this day, with each other, looking at this lovely place we call home, wherever that is. I want to shake people.
I don’t want to sound like I know something others don’t, but in this regard, I think I kinda do. I’m grateful for the knowing, which I think I’ve had most of my life, and for the continued teaching life has brought me to even better and more fully understand. I’m still learning. I take nothing for granted.
I know all of this, appreciate it, and yet I am still afraid. I still find myself holding my breath. It gets better, is getting better, but some days, sometimes, it’s tough. I want to see more of my share of sunsets, and laughing good friends. I want to get more kisses from my grandson and from our puppies. I want more hand holding and hugging and smiles. I want more wind in my face and sun on my feet. I want more. I want. The wanting is a very hard thing to admit out loud. But it’s there, every time I get worried. Every time I am afraid. I want because I am loved and I love so deeply.
It’s cycle ten, people. Can’t believe it. 19 months since this all started and only just over nine months to go. I saw my oncologist today. The every three month visit. I had a couple of concerns as my liver counts had been elevated for awhile. My GP even ordered an ultrasound last week to make sure everything was ok. The results came in last Thirsday and it was good. But the numbers were still high… She thought it might be my chemo meds, but since my cholesterol was also good on the lowered cholesterol med, and I’m on an eating plan and working out again, she decided to take me off the cholesterol meds completely to see what happens there. I’ll be tested in late March to see if I can stay off of them. It’s also less taxing on my liver to be off them.
So today… Met with my oncologist. My numbers, CBC and Metabolic panel, were all good. Even my liver numbers, save one, we’re all back in the normal. The one that wasn’t was barely elevated over high. And this was me…. Sigh…. Relief. My doc allayed all my anxiety, which always rears it’s head in a big way right before I have the quarterly. To say I get anxious doesn’t fully describe it… I’m usually afraid of the what if. Not rational, but true none the less. This is when Ativan is my friend. That and hearing him say everything is great and I’m doing fantastic. Yes brother… Thank you!
So here I am… Cycle 10. Two to go. Entering the realm of taking 9 ATRA a day for 15 days on top of the weekly shot and the daily 6MP I’m already taking. Headache… Here we go. Tylenol and staying hydrated… Both become my good friends. And before you think I’m complaining… I’m certainly not. ATRA saved my life… Along with hardcore chemo, the love of my honey, family and friends, and fantastic medical staff. So there’s no complaining out of me. Zip.
What there is… There’s a huge sense of being grateful, being alive, being blessed with more love from family and friends than I can measure. Life, this life.. My life… It’s beautiful. And I am thankful for it, and for the ATRA I start taking today.
Cycle 10, people…. I’m in the last several months of maintenance now. This life is a wonderful miracle and I am more fortunate than is possible to express. So ATRA… Let’s go!
Yay! The beginning of this new cycle has come to a close as I took my last dose of ATRA this morning for another three months. I’m thinking that the headaches will finally be gone, for three months anyway. Makes me happy. I didn’t know I would have this particular side effect actually… until I did. I didn’t realize I would have side effects. It’s the first time in this whole process that I’ve taken it after not taking it for awhile, and also not taking it either during or not long after a round of major chemo. So, I actually noticed I had side effects from the ATRA this time. Terrible headaches for the first five days or so which lessened over the rest of the course of it but never went away. Here’s hoping by tomorrow some time I will be headache free for awhile!
I’m glad this round of ATRA is over, but don’t get me wrong… I’m all for taking it. It’s helping to cure what was ailing me… good and big stuff that. So in my book ATRA = really good…. I can handle a few headaches. 🙂
Just got a call from my doc’s office with the numbers from the blood draw yesterday. All were really good, except my white count was 3.2. That number isn’t bad at all in and of itself, but it puts it in the range where my maintenance dose is reduced to half. This has happened a couple of times before, which is why my blood is monitored every week… if my white count falls into a certain range it’s an automatic reduction. Anyway…. my doc has decided to leave me at the half dose during the time I’m in England, since this reduction in white count has happened before. This makes it easier for us while we are there so we don’t have to worry about whether the counts are over that reduction edge. The protocol calls for reduction to half anyway if this happens a few times. My guess though is that when we return he will probably increase me to the full dose again. I’ll also be on another 15 day round of ATRA starting the day after we get back. But that’s then… for now we are getting it all ready. We will go in today so I can get the shot and also will be picking up all the meds (the shot meds for the month, enough pills for the month, and then refills of other meds for me to take in case I need them… ambien, etc.).
I’m starting to get excited….. we are actually going to be able to go. I’m actually going to be able to go!!! Woo Hoo!!! I’m crying right now… life is so beautiful!!
Getting the maintenance phase of this all worked out is… happening. Had to go in again today (had the CBC yesterday) for another blood test (one of my liver function tests were high from last week and my doc, who is the hospital doc this week, didn’t get it ordered before we went in yesterday). No biggie. Just another slip sliding adventure coming back up our driveway. Have to go in again today to get my shot. The results of all of this tweaking of my maintenance (my doc lowered my shot dose to half last week as well as my pills from two to one after getting my blood work back last week and finding my white count wasn’t quite as high as he’d hoped)… I will, from now on, be on the half dose amount of both shot and pills. They will not be raised back up. The protocol calls for starting at the high dose and if the counts don’t go too low, staying at that dose, but if the counts don’t maintain well enough at the high dose it should be lowered to the half dose amount, which is what seems to work in my case. My liver test from today also improved with the lower doses so the doc and all feel this is the dose for me. We will see next week. We’re hoping to get all this stable in the next couple of weeks… before we fly to England to see the kids and our grand boy, Sebastian. I can’t wait to meet him!
To clear all this up… I am now on half the shot amount and one pill a day. Then, every three months, I take another 15 days of ATRA along with the continued weekly shot and daily pill. The only thing left to finish working out is getting it squared away with an oncology department in England to give me my shot every week while we are there. Four shots in total. Karen called and talked to them to start the process and got the contact info for my doc to call them. Kaiser is going to package my shot meds so that Karen and I can carry them to England. Karen talked to the TSA to make sure we had what we needed from the doc, paperwork wise, etc., to get through security. So after my doc talks to the doc there we should, hopefully, be good to go. Yay!!!
I’m not looking forward to the long hours of travel… we fly to Chicago from Portland then from Chicago to Manchester, England. O’Hare is a bummer of an airport. Busy, no good services (internet, etc.), and weather effected this time of year. But hey, we’ve flown through there many a time so we are familiar with it and know how to deal with it well. We are definitely seasoned travelers. We make ourselves laugh we are so efficient…. Get to the airport, check bags, go toward security, stop to take off watches, put cell phones in the backpack, get to security and take out computers and take off shoes in line, go through the line… get some food for the plane, get on the plane, get out Bose headphones and laptop for movies if movies on plane aren’t any good and also iPod in case music is the thing, eat our previously purchased food, get to O’Hare, find some floor space in a terminal hallway near an outlet (they don’t have areas with plugins for computers, etc…. part of it being a bummer), plug in and put in a movie or two depending on amount of time, get on the plane to Manchester, repeat all plane activities mentioned before, get off the plane, bags, customs, train to Lancaster, stay up to what is a reasonable evening hour in Lancaster to combat the jet lag, and then crash for like 13 hours. And that, ladies and gents, is how it’s done. It’s going to be a tiring long day, but it’s so worth it… and always kind of exciting. I might say it’s tiring, but it’s also sort of fun while it’s all happening.
For now we have tiny bits of snow coming down and we leave in another hour and half to go back in to the clinic. Tomorrow… Thanksgiving and really taking time to be joyful and thankful. As I said in an email to some of my family the other day… to quote myself…
I am thankful every day for the day itself, for my beautiful family loving me and me loving them back, for my friends who also love me greatly and who I love as well, and for the wonder and joy I feel just looking at the world around me. It’s a glorious beautiful thing, this life. So thank you both for the Thanksgiving dedication… I think Thanksgiving has, this year and moving forward, become my favorite holiday. What better reason to have a day of celebration… to stop, pause, and be thankful and grateful in a very conscious way.
I’ve been holding my breath for what seems like a lifetime. Moments of being so very afraid, but not letting myself think about it. So scared sometimes. When something like this happens to you you fight that all the time. I am, as all who know me would probably attest to, a positive person. I think positively, I act positively, I smile all the damn time. It’s who I am. I have been that person through this process so far and will continue to be I would imagine. But there have been times… thinking what might happen, what could happen. Dark moments. I didn’t let them get the best of me and always managed to push them back and away… but there has been a sort of hum inside. A holding of my breath.
With each treatment round I’ve kept the attitude, this is killing it, this is curing me. I kept thinking that, even in the beginning when I was most sick… and subsequently, every time after another round of chemo when I didn’t feel good or couldn’t go anywhere because I was neutropenic. I kept saying… this sucks now, but it’s killing it, it’s taking care of me.
And you know what? Today I got the best news of my life…. right up there with when my Mom got past her bought with breast cancer and when Karen told me she loved me for the first and all the times after, and when we sat on that beach in Hawaii making a commitment to each other, and when Mary told us she was pregnant, and when I presided over Mary and Martin’s wedding. Those, some of the very best moments of my life, were joined by the news today that the molecular scan of the bone marrow biopsy I had two weeks ago, results just back, showed no abnormality. None. There was no sign of leukemia in my marrow, in my chromosomes, in me. It was totally clear.
I just spent the last half an hour crying on and off, and will probably be the rest of the day. I called Karen immediately (she’s traveling for work) and cried with her on the phone. She thought, initially, something was wrong because I was crying so hard I could barely speak. I called my Mom and I called my brother… same thing… crying so hard. Crying out of happiness. Crying, and finally… letting out a little breath.
It’s been a busy busy weekend. Friday night dinner at Stan and Connie’s, with Stacia, Kev, my honey and I. It was a great time. Excellent food, as always, fantastic company ( I love you guys), and just really relaxing and comfortable. Then yesterday Karen and I headed over to Maggie’s for a pumpkin carving party (plus chocolate treat making and some great ribs… thanks again Kate!). We carved pumpkins, made chocolate pretzel treats, ate some great ribs, chatted it up with the pod (the name we all use for this particular group of women we hang out with), and watched some football and the World Series game. Also a fantastic time with a fantastic group of women. We love you guys. It’s always so good to spend time with you. This time pretty special since it was the first time we’ve been able to get together since the whole leukemia thing happened.
Today, Halloween, we are hanging at home. Karen and Kev are out doing yard work… picking up and blowing leaves. Quite the chore around here. Earlier they went to winterize one of our rentals (they also picked up a chicken sandwich and potato wedges for me… my first craving realized. 🙂 I have started craving stuff again. It’s a thing I really never thought about before, but craving stuff is something I haven’t done in the last few months, my appetite and such is coming back… it’s a good thing. It’s actually pretty nice out there. Perfect fall day for doing the leaf thing.
This week coming up I have a blood draw, a bone marrow biopsy, and possibly my weekly shot on Wednesday. Last week my neutrophil and white counts were down a bit after getting the shot the week before and taking the low dose chemo for a week (the red counts were up a bit, which is great for the energy level). We asked my doc some questions about it, he looked into it a bit, and ended up taking me off the pills (since Friday) and we may hold off on the shot. I will be back on both when my counts are up again. He may adjust the pill or shot amount to keep my counts from dropping too low. We don’t know how low they will go if I stay on the current doses, etc. It’s a process of finding the right thing for me. I’m still on the ATRA (I have a few days left on my 15 day cycle this round), but the other stuff, both low dose chemo, is on the back burner until after the blood test this coming Wednesday, which will happen before the bone marrow biopsy. Then, on the 10th, after another blood test, and probably a shot, we have an appointment with my doc to chat about maintenance and everything. We are trying to get the plan, and me, stabilized so that Karen and I can go to England in December and January, as planned. Everyone cross your fingers, send those vibes and prayers, wishes, and hopes, that all goes well this week and that we get everything else worked out. It would be great to meet my grandson and spend Christmas with him and his parents.
For now, today… I’m keeping track of my fantasy football teams and hoping for a couple of wins (I’m in two leagues… LOL). I am also hoping for a win for my honey. Goooooooo honey!
On our way home from a family dinner at Mom and Don’s place. Stopped at the pet store on the way home for bully sticks for the pups. They love them.
Dinner was so good. Got to see family I haven’t seen in a long long time. Nice! Nothing like being in a room with a bunch of people I love and who love me. It’s what life is about.
Had my appointment with Dr. Bigler yesterday. I start maintenance this coming Wednesday. My numbers are holding steady. Not all quite in the normal range yet, but good enough. I do have to have another bone marrow biopsy… It’s looking like maybe November 3 for that. Then it’s just two years of the maintenance cycle and I will be done with the meds. Maintenance involves a weekly shot, a daily pill (or maybe two… We don’t know yet how much as they have to do a formula for it) and 15 days of ATRA every three months). I should be able to get into a pretty normal routine and back to a pretty normal life. Next Wednesday….. Here we go…..
Now, home to the pups with bullies. They will be so happy.
My honey is my strength. I’ve known this for a long time. I don’t want to say I don’t have my own strength, I do. I have tons of it. But somehow I feel stronger with her around. I feel like more is possible and that I can do things I didn’t think I could, or I was afraid to do. I don’t know.
Since this whole thing happened to us (because it definitely didn’t just happen to me) I have not been myself completely. I, as I said before, get panic attacks now. For anyone who knows me this would be very surprising since I was (and will be again) the most mellow of people. Very laid back. Now, out of the blue, I get these moments of anxiety and panic. Weird.
This brings me to today. My sweetie decided that I needed to get out of the house. She has decided I need to get out of the house a lot more than I have. She’s right. So today we decided to go for a drive, but as the time approached for us to leave I started to get wonky. Which is what I call it… getting wonky. I started sweating, my heart started racing, I felt like I couldn’t breathe, felt like my throat was closing… the whole nine yards. I got testy and worried and a bit freaked out. My honey kept talking to me, telling me I could do it, and we ended up getting teas and then driving around Sauvie Island. I was fine by the time we actually got to the island. It was a very good thing for me, and she knew it. At one point I felt like I couldn’t do it, but she knew I could. She’s my strength now… until I fully get my own back.
On another note, but sort of the same…. many of my friends have had family members diagnosed recently, and some not so recently, with cancer. One of those friends lost a family member today. My word to the universe, through this blog, is give what you can to research. It’s the way through this terrible thing called cancer. Much love to my friend and her family as they mourn and then celebrate a beautiful life lost, and to my other friend and his family as they start down the road and begin the fight.
Here we are, my sweetie and I (and the pups), hanging at the house today. Karen woke up at 5:30 and couldn’t go back to sleep (still on England time I think), so she got up. Luckily we went to bed so early and she went to sleep pretty early so she actually got enough sleep. It’s seemed like a long day, especially for her, so it’s been really nice.
Yesterday we spent several hours at the infusion center while I got a transfusion. At least there was a TV in the room, plus we got to talk to each other, in person. So nice. The only faux pas of the day happened just as we were leaving. She was pushing me out in the wheel chair when I asked her to look at my neck, which felt hot and itchy. She did and then we got the nurse and he said… looks like hives, back to your room for you. They put in another IV and gave me some IV Benadryl and then had us stay for another hour or so to watch me to make sure I didn’t have any other issues and that the hives went away. They did. We all didn’t know if it was a reaction to one of the bags of blood, or if it was unrelated, but it was better to be safe than sorry.
We got home last night and at one point a bat started flying around in the family room. Kev opened up the door and eventually it flew outside. We have no clue how it got in. Must have come in through a door at some point, though we don’t make it a habit of leaving the doors open at night very much. I personally think it just sensed that there was another blood sucker in the house and it wanted to commune with it’s peeps.
So, back to today… mellow. Nice.
I have a blood draw tomorrow. Hopefully the numbers start coming up. It will be day 19 of my cycle, so there you have it. We’ll see what’s up. I do feel a little stronger today after getting the blood yesterday. That part is nice. I left the infusion center saying I hopefully wouldn’t be back. They said… well, the last chemo treatment is usually the hardest on the numbers and the body, so you may be back. I say… one day at a time.
For now my honey is making dinner, Weston is sitting next to me on the sofa chewing on a bully, the little girlie is in the kitchen with Karen, and I’m watching the Next Iron Chef. I’m so addicted to these competition cooking shows. Who knew…
So I had the blood draw today. Good news… the neupogen must be doing it’s thing because my white blood count is up a bit, not normal range, but up, and my neutrophils are up enough that I’m no longer neutropenic… yay! The bad news… my red blood counts are all down. Not unusual since this is my nadir period. Nancy said they could still be going down a little. The thing is… they are down enough that my oncologist decided I needed a transfusion. Bummer. I have to go in tomorrow morning at 8:30 to get it. Poor Karen. First day back and she has to get up early to take me in for a procedure that takes about 4 or 5 hours. At least we will get to talk. I love that she’s home. I haven’t said much about it, but it’s been hard at times not having her here. I’ve been through quite a bit in the last month and have missed having her with me. I’m so glad she was with Mary during this time, but I did miss her terribly!
So, another damn IV tomorrow. Hopefully my last for a long while. Good thoughts for that.
It’s been a few days since I posted anything. Not much happening around here, for me anyway. Just laying on the couch being sort of tired as my numbers are down. Blood draw tomorrow. Here’s hoping the neupogen has done it’s job (had to get three more shots, for a total of 11… the last of which I gave myself today) and the white blood count and neutrophil count are up. Tomorrow is technically my nadir (the low point) so even if the neupogen hasn’t given me raised numbers they should start coming up on their own. I’m hoping for a more rapid increase because of the neupogen, but we shall see. As to my tiredness… my red counts were down on Monday…. and according to reports from Mom and Kev I’m looking pretty pale, which I always do when my counts are low. The neupogen doesn’t do anything for the red counts, so we just have to wait for those to come up on their own. They usually take a bit longer normally Again… interesting to see what they will be tomorrow.
The good news is that I haven’t gotten a fever so far… knocking on wood now… and so haven’t had to go to the hospital this time around. I’m hoping that holds and I don’t get one, and don’t have to go. I guess if I do I do, but it would be nice not to.
The best news is that Karen comes home from England tomorrow. I know she is having a hard time leaving Mary, Martin, and Sebastian, and I totally sympathize with all of them. This long long distance thing is so hard. I am glad though that she’s coming home to me. I have been so well taken care of by Mom and have loved having her here, but I’m sure she’s ready to go home as well. Mom says she’s loved spending this time with her kids… after all, when does a Mom get a chance to spend a month with her grown kids like this. Pretty nice, even if the circumstances haven’t been ideal, it’s been wonderful. I have missed Karen terribly though and am so glad she is going to be on her way to me in just under two hours. It’s a long journey for her… she will be traveling for 18 hours… and she will be exhausted. But, she will be home… It’s been our longest time of separation and I can’t wait to see her face.
Just got the news from today’s blood test. I am, once again, neutropenic. Numbers are low. They are hoping they don’t stay low for long, given that I’m on the neupogen. Here’s crossing our fingers, toes, and whatever else you can cross, that I don’t get another neutropenic fever. I haven’t had a fever at all so far this time around. I’m checking, as I’m supposed to, several times a day. It’s day 9 of my cycle. Usually my nadir is around day 16, nadir being the lowest point. I got the fever last time on day 12. Come on Neupogen, do your duty!!
Otherwise I’m a tad tired, but doing OK. My red counts are all down slightly, but not enough to really matter. I’m still way far away from having to have a transfusion or to have platelets. That’s all good.
Had a great visit from Stan and Stacia today. They were here for a bit. Always nice to see them. I’m feeling tired now, sorry Jimmy for putting your visit off. Getting the number news sort of zapped it out of me.
One day at a time folks… so far today is OK. Cheers all….
Had a kind of hard day today. Just not feeling well. It’s day 7 of my cycle. I made the mistake of getting up and taking a bath, and then shower to rinse off, right away. I should know better. I need sustenance before I do anything when I’m going through this. No energy before food. So by the time I was out of the shower I had to lay down immediately so I didn’t throw up or pass out. Not fun. I managed to get through that, but it has informed my entire day. Nauseated on and off all day. I’ll get through it.
In other nice news though… Karen booked her return flight. She is coming home on Friday, October 1, at 1:15. I miss her terribly so knowing that she will be home in 9 days is the best gift I could get… even though she sent me another birthday present today. First she gets me a wonderful new watch that I can set two times on so that I will always know what time it is in England while she’s there (she’s a great gift giver!), and then today I get a Kindle. Yep… she got me a Kindle. So cool. I’ve talked about getting one, for traveling mostly, and so she got me one. It won’t always replace books, which I love, but it will definitely be cool to have. I love that woman of mine. She’s the best… and I mean that. I don’t say it lightly. She knows me, and loves me for me. What more can you want in a split apart?
Otherwise… Mom gave me my fourth shot today. I have to move them around and so this time it was in the arm. I can’t really reach to do it properly myself in that spot so Mom volunteered. I told her I would do it in my leg again, but she wanted to help out. So there it is. 4 down… 4 to go.
Now… time to watch Bravo’s Top Chef Just Desserts. I’m addicted.
We went in today for the first of two pushes in my last consolidation round. Had to be there at 8:00 this morning, which is tough for a girl who is used to getting up some time between 8:00 and 9:00, but I did it. Drove in, had the blood draw at 8:00, killed some time for an hour and a half until my appointment with Dr. Bigler at 9:30, he looked me over and the numbers over, said everything was good to go, and we then went over to the chemo area. I had to wait there for an hour before getting in. Finally we walked back and I got an IV in… tough, but not too bad, and the saline started. I then got my pre-meds (some stuff to help me not get nauseas) and about a half an hour later, the push started. The nurse was great… she pushed a bit slow, making sure it was nice a diluted as it went in (trying to prevent the phlebitis I’ve gotten the last couple of rounds) and then it rinsed through with saline and we were out of there. I was starving by then… it had been a long time since the morning cheerios, so we went down to the cafeteria in the central office (convenient) and each had a sandwich. Then home…. Which is the best. I got to come home. No hospital stay to get this done. Just the push… then home. Nice. And for dinner tonight? A salad with chicken, parmesan, eggs, peppers, tomatoes, and blue cheese dressing. Not to mention a nice piece of toast to go along with it. I was not neutropenic this morning when my blood draw happened, and we are assuming I am still not neutropenic for at least today and tomorrow. Probably not until Monday at the earliest… though something we’ve definitely learned is that each consolidation round is different than the last. We’re hoping no fevers, no hospitals, no transfusions. Just a decline during the nadir and then a rise to October 15 and my meeting and start of the maintenance round. For now though… home sweet home. It’s nice.
The changes… I got a bit less chemo (they reconfigured because I’m now on outpatient status, based on weight and height… and since I’ve lost 40 pounds the amounts were less) and they also reconfigured the amount of ATRA I’m getting… 9 pills a day instead of 10. I start that again tonight. One other thing… I’ll be giving myself a shot every day for a bit starting on Saturday. It’s called Neupogen… it’s supposed to help my white blood cells recover faster. My doc is trying to avoid me getting another neutropenic fever. The shots didn’t seem that bad as I was practicing on a little thing at the chemo center. We’ll see how it goes as I give them to myself. I might have to talk Mom into giving me some of them. We’ll see how it goes. I don’t know how long I’ll have to do it… probably at least 7 days… but it’s based on my numbers, which the pharmacist (as well as my case manager as usual) will follow them. I might have to go in three days a week instead of the two during this time, we shall see. Nancy told me to tell the pharmacist that I am already getting my blood draws twice a week. Maybe that will be good enough… if not, I won’t be doing this too long (hopefully) so it won’t be too bad. We will do what I have to… as always. I got refills of zofran (anti nausea med) and a refill on the Ativan ( I was running low). I also got a medicated lozenge for the thrush I’m having after the antibiotics I got in the hospital. Something I’ve learned with this is that there’s always some little thing. Part of the process… but hey… we are moving through it.
Taking it day by day… and tomorrow… the last push, which just happens to coincide with my 45th birthday. Two things to celebrate in one day.