… 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

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.

Random Thoughts on a Wednesday

I was just wondering, uh… now I forget.

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.

After The Rain

After The Rain (Photo credit: Tj Parker Photography)

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.

Ramble.  Ramble.

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Crying Tears of Joy, In the Garage

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.

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Finally, I Say Thank You

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.

Nancy…

 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

Go Live a Normal Life

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.

Now?

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.

ATRA… You’re Back

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.

Cycle 12, last round of ATRA… amazing.

The Power of Two

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.