17. I’m thankful for laughter. The way my honey laughs with her whole body, how my brother slaps his knee when it’s a real good one, the grandsons giddy sounds, my friends smiling eyes when they laugh, strangers passing by who are cracking up, my family’s sounds of laughter at a family function, and my laugh when I’m crying because something is just so wonderful. Laughter is the music of the soul. It’s joy out loud. I’m greedy for it, in myself and in others. Nothing beats a good laugh.
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.
Wow… Thanksgiving is tomorrow. Can’t believe it. Sometimes these things sneak up on us. Not that we aren’t prepared, we are. It’s just that I can’t believe it’s already that time of year. We have entered the holiday season. And again I’ll say… wow.
Now that I’m getting over my shock at the time of year it is, I want to give some thanks, as has become my tradition here at the think tank every year. I am thankful for so many things….
First, as always, I’m thankful for my honey. I just spent a couple of weeks away from her and let me tell you, I’m no good without her. I mean this in a metaphorical sense people so don’t go making assumptions about my lack of self esteem… my self esteem is in tact. It’s just that I don’t like being without her. As I explained to my Mom and my brother, Karen is my home. A house is a structure that, if done correctly, reflects who we are, feels cozy to that end, and shelters us from the elements. A home, on the other hand, is where our heart lives. Mine lives with Karen. Hers with me. We are simpatico in this. Which makes it all the more real and heartfelt. My home is with her, no matter where we live, and I am beyond thankful for that. I’m blessed to have met her, lucky to have snagged her, and honored and humbled by the fact that she continues to love me, and love me more every day. I can’t begin to express what this means to me, and really I don’t think there are words to describe it. She is my breath, my light, my warmth, my love. She is my split apart, and I am hers. I whisper, thank you thank you thank you, out to the universe every day for her.
Mom and Kev… We are, and have been for a long long time, the three amigos. Having spent time with you these least three weeks (one here and two there), I appreciate you even more, if that’s even possible. There is a magic that happens when we are all in the same room. I’m so lucky to be a part of that. So lucky to have you… I feel love and gratitude for you every day.
Mary, Martin, and our little man… Thank you. Thank you for allowing me into your lives, into your family. As I’ve said before, I never had my own children, but nevertheless I consider you mine. I feel a part of a family, with children, and grandchildren, that I would never have without you and your acceptance and love of me. I love you guys and am so very grateful for you every day.
My family and friends… I tear up thinking about all of you, near and far. For one person to be blessed with such an outstanding group of people in my life… I am so humbled. You bring the zest, the encouragement, the support, the fun, and more love than I thought possible. I’m amazed every day by the depth and quality of the people in my life. Not only the sheer numbers of you, but by the people you are. Each and every one of you is a stellar human. I mean this. Family to friends, each of you brings something so uniquely you to my life. I treasure that. I treasure how individual you are, how loving you are, how fun you are, how many smiles and laughs you’ve given me over the years, and I feel so fortunate to have all of that with you. I am blessed beyond measure for knowing you, for having you in my life, and for continuing to get to spend time with you when I can. No matter the distance it seems we always manage to pick up where we left off, be that a year ago or yesterday, and I am honored by that, by your presence in my life. I feel you with me every day and I’m so very thankful for you.
The pups… I don’t know if I’ve said this before, but they are so important to me and every day I’m so loved by them, and grateful to them for their little selves in my life. They are my home as well, and I am so lucky to have them. They love without condition, without pretense, without judgement or agenda. They’re always excited to see me, even if I’ve only been outside for a moment, and they are always completely genuine. I love them more than I can measure, and am so very thankful for them. They bring a joy to my life, our lives, that can’t be measured.
I always say the only thing in life that truly matters are the people we love and who love us. I mean this. Everything else is set dressing, though nature, in all it’s glory, is a wonder and something I’m also grateful for every day. To that end I’d like to include the following poem by e.e. cummings. He’s my favorite poet, and I’m humbled by and grateful for his words, words that have helped, at times, me to get through periods of struggle. Words that have at times helped me to better explain the world to myself. This is one of my favorites of his… and it pretty much sums up the rest of it, the rest of what I’m grateful for…
i thank You God for most this amazing
i thank You God for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky; and for everything
which is natural which is infinite which is yes
(i who have died am alive again today,
and this is the sun’s birthday; this is the birth
day of life and of love and wings: and of the gay
great happening illimitably earth)
how should tasting touching hearing seeing
breathing any–lifted from the no
of all nothing–human merely being
doubt unimaginable You?
(now the ears of my ears awake and
now the eyes of my eyes are opened)
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.
With an eye made quiet by the power of harmony, and the deep power of joy, we see into the life of things. — William Wordsworth
Today is Nick’s birthday. He’s my nephew, and a fantastic guy. He’s had quite the life already. Finding himself in not always the easiest of circumstances, he always manages to keep plugging along, trying to move forward, and work toward the greater good of himself. I admire this in him. He’s still young, still trying to figure it all out, but he’s doing that, trying to figure it all out. He’s not shying away from it. He’s out there, living his life. He’s also a bit of a kindred soul to this token hippy girl as he would, I think, describe himself as a hippy guy.
Nick… I hope today brings you joy and happiness, and that you find those two things as much as possible in all the years that follow this one. I love you very much young man. I know, given everything that’s happened in both of our lives in the last years, that we haven’t talked much, or often, but I want you to know that I love you. Always. You are soulful Nick, and your heart is so very big. So this is the only piece of advice I will give you today… I know that big heart of yours has gotten you into situations in the past that have not always worked out for you…. don’t give into the adversity of it all and close down or off any part of yourself or your heart. They are beautiful, your heart and soul, and they will lead you in the right direction. Quiet yourself, listen to that brilliantly beating heart of yours, and I mean really listen, and you will not go wrong. Don’t act rashly, but act… be. And most of all… have faith in you, be confident, and be happy. Know that I have faith in you, I believe in you, and I know you are going to make fantastic things happen for yourself. Your passion, your soul, and your heart tell me so.
Nick has a great quote on his Facebook page which I copied and put on the inspirations page of this blog today. I’m also going to post it here as it pretty much sums up the Nick I know. How he wants to live his life, is trying to live his life, how he sees the world. I love you Nick… and happy birthday.
May the poor find wealth,
Those weak with sorrow find joy,
May the forlorn find new hope,
Constant happiness and prosperity
May the frightened cease to be afraid,
And those bound be free,
May the weak find power,
And may their hearts join in friendship.
The Dalai Lama
I got home yesterday to find a letter from my grandpa had arrived. I was thrilled.
We live in an age when hand written communication is going by the wayside. We call, we fax, we e-mail, we instant message, and we text message. We hardly ever sit down and actually write out, in longhand, what we want to say… and then to follow that up with taking the time to put it in an envelope, address it, put a stamp on it, and mail it. Unheard of.
So grandpa… thanks. I loved getting a letter from you. And, I had no trouble reading it either, as you had imagined I might. In fact, I read it aloud to Karen as she made dinner last night. It was fantastic.
Getting the letter made me think about my grandfather… and there’s so much I could say about him. Like, I wonder if he knows he’s the axis at the center of things in our family. I wonder if he realizes he’s where we all get our incredible sense of what’s right, our wonderful sense of play, and our good hearted and good natured demeanor. Because, amazingly enough, down to the last of the 60 of us, we are all both good natured and good hearted. It’s incredible really, the way we all look at life as a big adventure while at the same time keeping that balanced with a strong sense of responsibility. How did that happen, how did we get so lucky. Personally, I think it started at the top. It was grandpa. Grandpa and grandma.
It is luck really, to be born into such a family. This brood of fun loving, intelligent, interested, educated (and I don’t mean just formally), curious, playful, music loving, genuinely nice, thinking, eclectic, sincere people. And I say to myself… thank God I drew this lot. Thank you thank you.
I think about all of us, the line of us, and at the pinnacle is grandpa. He is the embodiment of everything we strive to be. And I know, if he’s reading this, being the guy he is, he won’t take credit for too much of who we’ve become… but he should. He was the example we all gauged our lives by… and in fact, he still is, and we still do.
He worked hard to support a family of 9, and I don’t think anyone has ever heard him complain about it. Ever. Not only that, through all of those years, he was a true partner to my grandma. They had, at least to an outside eye, a near perfect balance. He was the calm, always, in any storm. Level headed, easy going, and generous with his time, and his attention. As he still is.
One of the most amazing things about him is the glint in his eyes. He has a bit of mischief in him, and always a bit of fun. No matter what he’s doing, when I’ve been with him at least, he seems to enjoy himself… to find the fun. He gets life, knows what’s important, and loves it. To see that glint is to know he enjoys every day, and sees it as a gift. At least, I feel like he always has, and even if that’s not true, he made me feel that every time I was and have been with him, which is incredible.
I think about grandpa and I feel this overwhelming sense of pride. Pride because he’s my grandfather, pride because he raised my mother and her siblings to be who they are, and pride because I get to be a part of that… a part of this amazing history we are making every day. What’s more, I feel like grandpa has always understood me… like he’s always seen the real me. He’s always seemed to know what made me tick, and he has always been genuinely interested in what I had to say, even when I was very young. I’ve learned so much from him. Not just how to tie my shoes, which he did teach me, or how to play chess or backgammon, but what it means to be accepting, generous of spirit, and emotional. In fact, I’m getting emotional now… writing all of this and thinking about him. It’s how I am. I think about what makes me proud or happy or how much I love the people in my life and I get teary…. which, I guess, is something else I got from him. He is truly a grand self possessed man.
Lastly, there’s something else that when talking about grandpa a person can’t ignore or leave out… music and dance. He has played music nearly all of his life it seems, from the time he was a young man. Piano is his instrument of choice. He didn’t learn to read music, but instead listened, and then played. He loves it, completely, and has a style that is all his own and instantly engaging. Largely because of him music has always been a part of our lives, the love of it passed down from one generation to the next. Many of us have learned to play an instrument, or sing, or just to appreciate all kinds of music, the sounds of it playing around us most of our days. And for the gift of that, of making and listening to music, I am immeasurably grateful to him. The joy it brings, the center, the peace… he understands that, and has helped us to understand it as well. Besides playing and listening though, my grandpa also loves to dance. He relishes it, most especially now with his daughters and granddaughters. And when you partner him it’s as if you are transported to another place, forced to let go of everything in life expect for the moment you’re in with him… following him and moving to his own personal rhythm. It’s a wondrous thing. To get the honor of dancing with him, anytime… it’s jumping into life with both feet, letting go, and holding on… all at once. His love of it has been infectious, lovely, and yet another lesson in living life to the fullest.
It’s hard to sum up your feelings for and about someone, but I guess I’ll just say this… to know him is to respect and care about him, and to be his granddaughter is, in a word, breathtaking. He’s taught me so much about life, living well, what it means to be a good person, and fun. He is, without a doubt, one of the best people I have ever met. In fact, he could easily be the best person I have ever met. And lucky me… he’s not just some amazing guy I know… he’s my grandpa.