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.
Coffee is a good thing. Really good.
Last night, or more accurately, in the middle of the night, we woke up because one of the smoke detectors downstairs was first chirping, then talking. Anyone who has ever heard that sound knows how loud and annoying that chirping can be. Add in the voice saying, “battery low”, “battery low”, and at 2:30 in the morning it’s enough to make you lose your grip.
At first it’s disorienting. You wake up not really sure what’s happening. You notice the dogs are also sitting up, heads tilted to the side, looking at the door. What’s going on? Then you hear the first chirp. Damn. You know instantly what it is. You think to yourself, it’s loud, but not that loud. After all, it’s one of the detectors downstairs, so it’s not even on the same floor. Maybe, possibly, hopefully, we can all just go back to sleep and deal with it in the morning. You coax the dogs under the covers hoping the little extra bit of blanket buffer will help them to not hear it. They just get under, you just lay down again, and… chirp. Uhg! The dogs are back up, the little girlie is starting to shake as loud noises really bother her. Double damn. Then you think, OK, we’ll shut the door. That will help create an even greater sound barrier. Dogs calmed and back under, lay the heads back down on the pillows, close the eyes, start to drift off and… chirp… “battery low”. Oh for crying out loud! Time to get up.
We did. We got up, we went downstairs, we took the backup battery out, put a new battery in, headed back up to bed, and then… we couldn’t find the little girl. Relieved after putting in the battery we were back up stairs, Weston following, with the thought of how nice it would be to actually go back to sleep. Then, we realized Riley wasn’t with us. Weston was right there, but Riley was not. We started calling her and looking around. Something about her little personality is that when she gets frightened by noise she hides, and she shakes, and she never barks. For a dog that barks all the time in order to communicate with the people around her in all other situations, she doesn’t utter a sound when she’s scared. Not a peep. The couple of times we’ve accidentally locked her in a room she has never barked. Once, after shutting her in our room accidentally, we didn’t realize it for like three or four hours or something. We’d left the house and been gone, gotten home, and were going about our business when we realized she didn’t greet us when we got home. That was unusual because that’s when she’s normally at her loudest. We looked around and found her in the bedroom, sitting there on the floor behind the door just looking up, all tiny and cute. Not a peep out of her to let us know she was in there. So she’s very quiet when she’s scared. Meaning she’s hard to find. She’s also tiny. She can curl up in small spaces and she’s hard to see. And during a crisis, you know, a crisis to her, she usually goes downstairs to the media room or to our bedroom and curls up in a chair or on the bed next to a pillow, but she didn’t. The media room is downstairs so it was too close to the sound that was scaring her. The bedroom is where we’d been, so that was not for her either. We looked everywhere. Under couches, under beds, in closets she could get in, under tables, in corners… everywhere. She wasn’t in the house. We’d opened the doggie door since the dogs got up with us during this whole ordeal so the next logical step was to look outside. It was a bit stormy, though at that time it wasn’t raining, thank goodness, and we looked out. We couldn’t see her. Not anywhere out there. We stepped out on the deck and looked around, nothing. Then the little bits of panic and illogical thinking start in… Where is she? Did she somehow get out? If she did she doesn’t have her collar on because the pups “get naked” at night. If she did get out she’s hiding or running trying to get back to us, or… or…. or…. and on it goes in your head. We weren’t, either of us, mad at all. We started to get scared ourselves. We started to worry about her.
Finally I started to wander the yard on the periphery and found her, behind a huge tree near the back of the yard. She was hiding in the farthest point from the sound inside the house. She didn’t want to come in, even though the sound was gone. She was still shaking. And she was wet from the dripping leaves. I had to pick her up and carry her in. Luckily she calmed down pretty quickly when she realized the bad sound was gone and things were back to normal. Except by then it was nearly 3:00 in the morning and there’s nothing normal to the humans living in this house about being awake at 3:00 in the morning.
Adventures abound. Which is why coffee is such a good and lovely thing in the morning. Especially mornings after big nighttime adventures.
How eventful you were. Your straight line wind brought three limbs off of a tree in our front yard, you sent us a visitor in the way of a raccoon inside our compost bin that I saw when I went out to put stuff in and then had to rescue by using a rake to push it over so the little fella could get out, you provided not one but two challenges for my honey on the phone with one ending in her being very very unhappy, though she got her way, and us leaving a banking institution she’s been with for 30 years and the other leaving her feeling like a conqueror after she got Comcast to lower our bill $50 a month while doubling our internet speed and throwing in HBO, and, dear yesterday, you had us meet with my oncologist for the quarterly check up with blood work where we found everything was awesome. Yes yesterday, you were full of some major surprises, some good news, and some frustration.
Dear today… what will you bring?
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
Alarm. Uhg. We don’t like the alarm, but really, who does. It actually doesn’t even matter when it’s set for. It could be 5:30 AM or 10:00 in the morning. It’s the idea of having to get up. Being told to so to speak. If we don’t set the alarm, but wake up at 6:30 that’s fine. We’re good. Just don’t tell us what to do.
Wander in to get the water going, the coffee ground, and the french press ready. This step is vital. Coffee before almost anything else. This includes opening the doggie door, poor dogs. Unless of course we already opened the doggie door some time in the early morning and just left it open. Our pups are pretty good about sleeping as long as we do, but occasionally they feel the need to get up and go out during the night. This disturbs and upsets us, but it’s part of the life of being people owned by dogs. They rule. Let’s not kid ourselves.
After coffee comes the waking of the computers, the checking of emails, the brief glance at Facebook, etc. Gearing up for the day by checking into the world outside of our humble abode. Sometimes things need to be attended to immediately, work to do, bills to pay, important emails to send. Sometimes there are no things emergent and the coffee, and we, go to the back deck, weather permitting, to enjoy a few sips while looking at and enjoying our garden, as the Brits say. I like that term, instead of yard. So much nicer really. I’m adopting it.
Garden viewing and email sending aside, at some point these girls have to eat. We are slow to wake, me more than K, so breakfast usually happens first for her, later for me. She’s an oatmeal girl, I prefer cold cereal. We’re trying to be healthy, trying to eat well, so the oatmeal works great for her and I’m currently munching on something akin to cardboard in an attempt to find a healthy cereal I actually enjoy. There have been recent hits, but currently we’re on a miss. I can’t throw anything out so I’m trying to convince myself it’s not that bad. Plus I’m only eating 3/4 a cup a day so it’s only a few bites. At this rate I can move on to a new box in about two weeks. Yay.
At some point in the day we may actually shower, if it’s a shower day, or not. We don’t hold to the shower every day principal. We don’t see the need. I used to be like that, but now it’s a miracle if I get a shower three or four times a week. Yes, if I can tell I stink, I shower, but unless we go for a bike ride or a long walk in the humidity, or we’ve made a trip to the gym, showering is unnecessary unless it’s necessary. This makes perfect sense to me. Maybe we don’t shower or bathe every day because this is a place in our lives that was better before Illinois. A few years ago we put a bathroom addition on our Scappoose house. This addition wasn’t just any addition. It was 300 square feet of bathroom deliciousness. A shower fit for a locker room. Huge, two heads, no door, walk in. And a pedestal soaking tub set in a bay window looking out at the forest. We had no window coverings. We didn’t need them. It’s really the only thing, other than the setting and the enormous shop, we miss about our former house. Our washrooms in our Illinois house could both fit inside that longed for Scappoose bathroom, with room to spare. Taking a shower or a bath here feels a little low rent compared to the bathroom we built there, the washroom we waited for a saved for seven years to build. We did get to enjoy it for a while though, and enjoy it we did. Perhaps we don’t shower or bathe here as often because it makes us a tad sad, a little reminder of things left behind.
Walk the dogs. At some point during the day the dogs get a walk. Usually. This is a change from our former life in Oregon. Where we lived in Oregon was not conducive to going out, directly from our house, for a walk with the pups. Too dangerous. Hilly, windy road, no sidewalks, fast-moving cars, etc. Not safe for the dogs and not safe for their people either. We had to drive them to walk them. The consequence of this was that they didn’t get walked all the time. Sometimes we went for days or weeks without walking them. Here in Illinois we walk. A lot. We would say that their life, because of the move here, has improved tremendously. They have a better backyard, as they have a larger fenced in area to roam at will, chase squirrels, chase an often thrown ball, lay on the chaise under the umbrellas, and generally bark at any dog that happens to wander by. They also get walks here, nearly every day. They get so many walks that if they don’t get one the boy gets antsy. He sometimes stares at us and barks. We then obey, we go for a walk. Again, they rule.
Grandsons on the loose. Well, to be accurate, I should say currently there’s only one grandson old enough to be on the loose. The other is still only seven weeks old so he can’t just run around on his own. That time is coming, and then boy, or should I say boys, are we going to have fun. We see the grandsons almost every day. Yes, there are occasional days when we don’t see them, but we see them often. Yesterday they came over for their Moo Moo’s birthday. Sebastian wanted to know if they were going to bake Moo Moo a cake for her birthday. This hadn’t been planned, but since he asked for it he and Mommy went to the store, bought a cake mix, came back here and made it, and then we all enjoyed a piece or two after. No frosting. Still good. I also spent some time reading to him and telling him stories about where he was driving his truck and trailer, with deer of course. Deer of course meaning there was a little plastic deer on the trailer he was driving around. He likes to drive it around and have me tell him where he’s going… i.e. the desert where it’s hot and sandy brown and you have to wear shorts and flip-flops, or the arctic where it’s cold and white and snowy and you have to wear your parka. He says, as he drives to a new area of the rug, “what does Gamma Tam say?”, and I tell him the story. The grandson rules too.
Realizing we are far down on the totem pole to the dogs and the grandsons we sometimes need time for ourselves. Yes, the dogs are usually with us, but sometimes we go out. We run errands, to pick up stuff for the dogs or grandsons or the house, have lunch at our favorite place to get good salads and eggplant fries (try them before you mock, they are damn good), go for a bike ride to the market or a coffee shop, spend some time with friends when we can, or just wander around at a local festival when they happen.
We make dinner instead of eating out most every night. Sometimes there’s an exception, like last night, K’s birthday, we got wings to go, after having gone to the pet store for stuff for the dogs. See what I mean. When we make dinner it’s usually something healthy. The other night we had stir fry made with chicken from our local farmer/meat guy who we buy all our meat from, sugar snap peas from our mini garden, green onions from our mini garden, mini carrot from our mini garden, and broccoli from a local organic farm that we purchased at the farmer’s market. It was good. Really good. Nothing like noshing on your own veggies. It’s our first year trying a raised bed garden and so far we are enjoying it. We’re going to have more tomatoes (two plants mind you) and potatoes than we can use, we think anyway, but it’s all good. That’s what sharing with your friends and neighbors is all about.
Speaking of neighbors. We really like our neighbors next door to the east of us. They are a little family, sort of non traditional in that they have been together for 17 years or something and never got married. They have two girls. One is about 11 and she likes to come over and swing on our swing. We have one of those cool wooden play sets that’s like a fort with a slide and a swing, etc. It was here when we moved in. Sebastian calls it Moo Moo’s house. No worries, I don’t make her sleep out there. We call it his fort and he loves it. So, as it turns out, does the neighbor girl and her bestie. They hop the fence all the time, with permission of course, and spend time both in and around the fort. The dogs love this as the girls also like to the throw the ball for them and Weston, who is a bit of a ho for attention, also gets loads of pets. They are sweet, which is why we pretty much let them come over whenever they want to. We get along great with them. We can’t say this for all of our neighbors as we also have the evil former librarian behind us who called the police on us a couple of times after we first moved in and wrote a couple of letters, sent in the mail, explaining how she doesn’t like our barky dogs. One… the police and animal control both said our dogs are totally fine, and two, they don’t bark that much really. And the barking they do it totally in acceptable limits in their own yard. Other people have dogs in this neighborhood who bark more. Is it us? We don’t know. We’ve been here for two years now and she seems to either have accepted her fate of living next door to us, our dogs, and our what I’m sure she thinks as noisy grandson. I wonder if she’ll ever call the police on him, you know, for laughing too much and too loudly in the backyard. I picture her standing on the other side of the fence, finger to mouth, as she loudly whispers… SHHHHH!
Living in a neighborhood, as opposed to on very private property, is a daily difference for us, but one we’ve found we like. There are, of course, ups and downs to it. The downs… no privacy and not as much room to stretch out on the property. We have a corner lot and neighbors all around. They know when we come and go, who visits, when we take the dogs out, they say hi to us on the street, or avoid us all together, they know our business. Not long ago we had friends over for a little chiminea fire and s’mores in the backyard. We were enjoying good conversation and some wine around the fire when we heard a terrible howling sort of sound. Which doesn’t describe it at all. It sounded like an animal in pain. It was an animal in pain. We went into the house, grabbed flashlights, and set off in search of the sound. If we could find the animal or help in any way we were going to do it. We weren’t the only ones. Some of our neighbors also came out with flashlights and as a group we wandered the streets searching. A corner was turned and there was another neighborhood person who said he saw the whole thing. There were foxes fighting with each other in someone’s garden. They must’ve come over from the arboretum, which isn’t far, or nearby farmland, also not far. They had a disagreement and those were the sounds we heard. After discovering what made the racket we all turned on our heels and walked back toward our respective homes, chatting about this and that as we went. A neighborhood… this is what it’s like. That and all the baked goods delivered to us right after we moved in. Astonishing.
Living sustainably. We’ve always considered ourselves a pretty green pair. We recycle, love the land, love to spend time in nature, try to buy local, eat organic as much as possible, etc., etc. We’ve always espoused this, but honestly we didn’t always live that way before we moved to Illinois. This is a case of getting a bit of a reset. Before we moved I started researching. We knew the reputation of the midwest. It’s consumer central. Or so we thought. Before getting here I found a co-op not far from our new house. We joined when we arrived and since then it’s doubled in size. It’s an awesome place filled with local produce, organics, meats, etc. We also found our new town had a weekly farmer’s market. At that farmer’s market we found there were local farmer’s who sold meat they grew, direct farm to table kind of stuff. We joined a farmer’s meat club and since then have purchased our meat directly from a local farmer. It’s amazing tasting, high quality, and doesn’t have any crap in it. We also favor a few vendors at the farmer’s market who now know us and so we have witty repartee with them when we see them. Same goes for the co-op, where we buy all the produce we don’t buy at the farmer’s market and where we also get breads from a local bakery. We try to avoid shopping at big box stores and instead opt, when we can, for smaller locally owned shops. Same goes for restaurants we choose to eat in most of the time. Yes, these things don’t always hold true, but we do a much better job here than we did in Oregon. Maybe because we had to look for things and spent the time doing it. We took things for granted there, and here we don’t.
A little snapshot of our lives. What a day looks like. Similar, I’m sure, to the days of people all over the world. We get up, we love each other, we love our dogs, our grandsons, the kids, our families, our friends. We try to have fun and joy in most everything we do. We make little adventures for ourselves, exploring our newish town and surrounding areas. We did this in Portland too, taking what we called neighborhood walks in neighborhoods we hadn’t explored, taking photos, grabbing a bite to eat somewhere new, seeing what we could find. We’ve had this attitude, K and I, since we met, and I think separately, even before we met. Every day, even the most mundane of things, can be made fun or interesting. We seek it out. People have said to us that we lead a fun and interesting life, that we are always doing stuff. When I think about people we know I think they are always doing stuff too. Going out for coffee or a walk or a hike, cooking a new recipe, playing with their pets or grandchildren or children, looking at sunsets with wonder, and feeling the rain or the wind or the sun on their faces. Life is rich and layered. Life is always there, waiting. It’s waiting for us to notice, to experience, to grab. It’s waiting for us to pay attention to the details. It’s the details that matter. The look from one of our pups, the way our grandson smiled, the smell of some flowers in our backyard, a dance break in our living room, the fun of getting on our bikes and going for a ride, the beauty all around us. Life is waiting for us to not take ourselves so seriously and to realize what’s always right there. Life is so very sweet.
This day, today, we did most of this stuff. Got up, made coffee, pet the dogs, ate breakfast, worked, showered, and looked at our beautiful garden. Later we’ll go to the store and pick up some stuff for the barbecue we’ll have at the kid’s house tomorrow for the fourth. We’re also going to try to watch some fireworks tomorrow night with the kid’s and our son in law’s parents who are here visiting from England. We’ll eat and play and laugh and chat. We’ll love on the grandsons and I’ll take loads of photos I’m sure. We don’t always take big trips, though we sometimes do, and we don’t always go to big events, and in fact we mostly don’t. Usually, like today, we just live our lives. Most days, like today, I look out this window and try to type some stuff, and K works and has meetings and the dogs bark and interrupt her. Most days we chat and smile and make food and watch TV. This is our life. This is our amazing life. This is our daily life, and it is beautiful.
I’m sentimental, empathetic, and very in tune with the feelings of others. Always have been. It’s the thing that makes me cry during silly commercials, sporting events, and when I hear a song on the radio that makes me think of someone I love. I feel things deeply. All things. Sometimes this makes it hard, I’m sure, to live with me. When I’m upset I’m emotionally upset, which I myself don’t always understand, and when I feel love I am so full of love I sometimes fear my body won’t be able to contain it. All of this emotion comes from the same well deep inside of me. It is at times overwhelming, explosive, warm, joyous, and all consuming. I don’t always appreciate these deep feelings I have, and have sometimes wished I didn’t have them at all, but honestly, I’m glad I’m like this. I’m glad I see, and feel, the world this way, through this blanket of empathy and love.
Earlier today I watched a Youtube video of a man using a flash mob, in Central Park, to help him propose to his boyfriend of many years. It was beautiful. Simply put, love is love. There can’t be too much of it in the world, in my opinion. So while I was watching this video I started to cry. It was moving, and as noted above, I’m a crier. I felt for them, was happy for them, happy for the people watching, happy for one of the guys Mom’s who was there to see it and crying herself. My honey looked over at me, we were both in our office, and said you must be watching something emotional. I had headphones on and tears streaming down my face. She’s used to this.
I watched the video and listened to that song and thought, once again, of my honey and how lucky I am to have her. It’s really, I think, why I was crying today. I was overwhelmed by the love I feel for her. I am difficult to live with. Difficult to love sometimes I think, but she is always right there, loving me as if it’s easy for her. Making me feel as though it’s easy for her, as though it’s something she has always done, something that’s natural and true. I am so blessed and lucky that she somehow manages to understand me and love me for all that I am, good and difficult. For 10 years. 10. I can’t express how much I love her. It comes from a place so deep inside that deep well of mine that I don’t think there are actually words. Just feelings so big and strong and true they defy articulation.
Honey… I have loved you for a thousand years and will love you for a thousand more….
I’d never owned a house. I was, until I met Karen, a gypsy of sorts. I moved and moved all up and down the valley, over to the beach, down to Southern Oregon, and back to the valley. When a person moves so much they tend to pare down. Meaning I also didn’t have much in the way of stuff. Some books and music, of course, and same old boxes of papers and some memorabilia from childhood, but otherwise not much. What I owned fit into a small Uhaul.
My life was, to a certain point, about movement, change, experience. The places I lived were weigh stations and spots to put my head at night, places to keep my CD’s and my stereo. They were not home.
Then she walked in. She walked in and some months later we bought a house. We owned a house. It was my first one. More than that though, we made a life there. The house was home for me, really, from the moment I stood on the front deck that hot summer day, wind moving through the trees, peace… quiet. I can’t explain that feeling, though I’m sure many reading this have had it. It felt right. Puzzle pieces moving, click, into place. The sound of that wind in the trees, a bit like the sound of the ocean, eyes closed listening, and instantly a house suddenly became a home.
We moved each of our things in, things that had been separate but were then combined. Things which had been mine and hers, but were then ours. We bought furniture together to fill the rooms and pots and pans and silverware to fill the kitchen. We bought art, oh how we love our art, and TV’s, cool bookends, and shampoo. We worked on the yard, planting flowers we chose, and putting up hanging baskets. We got wind chimes and hand blown glass hummingbird feeders, had decks, a paved driveway, and fences put in. Karen built tables and things in the shop, I took photo after photo after photo of the flowers in the yard. I trimmed trees, she weeded, I worked on the Japanese Garden, she mowed. We hauled in loads of topsoil, spread a bit of bark dust, and moved tons of rainbow rock. We lived.
Karen and I both got sick in the house, but we also recovered there. We added on a master bathroom and painted some of the rooms. Mom got married there, we threw big and small get togethers, we brought home both our babies, Weston and Riley, who loved it and called it there own, relishing the use of their doggie door and playing Chuckie in the yard. We sat in the hot tub at night, stars all around, and listened to the deer walking on the hillside. We even had a mountain lion living at the house for a time.
In our house we laughed, and danced, and cried, and hugged, and sometimes yelled. In our house we ate, watched TV, played cards, got snowed in, had visits from mostly everyone we love, watched the deer, and tasted good wine. In our house we loved each other.
A house is just a house, until suddenly it becomes a home. We poured our lives and love and heart and our souls into it and it gave back in kind. It is a reflection of the life being lived in it and ours was beautiful. That house, our first house, was not just a house to us, it was our home. A home we both loved… and love still.
I can’t believe it’s been a week. A week. Time goes so fast, or slow, or fast again, depending on how you look at it, and how you feel. To me, and in talking to Mom, to her as well, it seems as if the last week has stretched out creating the illusion that oh so much more time has actually passed than has. Yet all in slow motion… stretching. It’s strange.
It’s strange what emotions do to you. Sad ones anyway. A week ago today Mom called me early early in the morning to say her husband, Don, has died suddenly, and what everyone believes is pretty peacefully, in his sleep. She woke to strange breaths, tried to wake him, called 911, did chest compressions until the ambulance arrived, and watched as they worked on him both here at the house and then again at the hospital. He couldn’t be revived. She was sitting with him when she started making calls.
I couldn’t believe it early that morning and still I don’t know if I can believe it. I was just here visiting a month and a half ago. Just here at the house hanging out with them. Here chatting with him, loving that occasional mischievous grin he’d get sometimes when he thought he was pulling one over or getting your goat a bit. I really liked that grin. I really liked how he made my Mom happy. Gardening, traveling, spending time with family, trying new Vegan recipes together, reading the paper over good espresso in the morning, and watching the news at night.
Don was a passionate man. Passionate about seeing and exploring the world, passionate about his grandkids and kids, passionate about my Mom and their life here on the farm. He loved trying new gardening techniques and recipes and finding just the right mix to make a suet the birds would like and eat, mixing it up in big batches and devising a plan of delivery so the bigger scrub birds couldn’t get it all.
Sitting here helping Mom go through some of his papers I discovered he was a bit of a poet and philosopher at heart, eloquent when he wanted to be in writing his thoughts down. Snippets here and there of things he’d experienced while traveling, feelings he’d had as kept moving forward through life.
He was an amazing guy, and though I didn’t know him nearly long enough, or know him as well as I would’ve liked, I really only need to know this… he loved my Mom well, he loved his children, and he adored his grandchildren. He had friends he cared about and who care about him. He knew what life is all about. He lived his life using that as his guide… it’s about the people you love and who love you. And because he lived his life that way, because he knew it was all about loving his people and them loving him, he made such and impact on those people… he made an impact on me. I can see him in the beauty of his grandchildren, in their smiles, their sense of fun, in their determination. I can see him in his children, how they are as parents, who they are as people. His legacy is vast and far reaching. His memory, his impact on everyone, so lasting and strong.
Don… you loved well… and you are so well loved…
And if you can hear this… hear me… I hope the fish are bitin’ where you are, and I hope they look out because Fly Fish Don is coming.
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
I’m so fortunate. I have always known this somehow, even though I’m no stranger to trouble and obstacle and death and sickness. I’ve known it. I’ve also been lucky to somehow always have known the things that are most important in life. Which again I will say are the people you love and who love you back. That and all things gadgety. Well, maybe not really, but I love gadgets and was attempting humor.
Anyway… I’m fortunate to know these things, but then I experience something like I did this past weekend at Grandpa’s memorial service and I not only feel that fortune magnified, but I’m humbled by the enormity of it.
There we all were, family, friends, friends of Grandpa, and former students and teachers of Grandpa’s. The later groups, the former students and teachers, surprised us all. The surprise was not that they were there so much as what they said. It was humbling to know that Grandpa, who we as family already knew was stellar in his role as father and grandfather, was also stellar in his role as friend and educator, as boss and mentor.
The memorial started and we were sitting up toward the front. All of the family was around us, tables filled. I hadn’t looked behind me until it came time to pass the microphone around and offer people a moment to share their thoughts and feelings about Grandpa. We’d already had the siblings, his children, each offer their memories. We’d had a couple of musical selections. We’d listened to the words of some of his grandchildren. All fine and lovely and heart felt. All fueled by the deep love and admiration we all share. But then… then the time came for others present to offer anything they wanted about him. I turned around to look and listen, totally surprised by the number of people there. There were a lot of them, and offer they did.
From the man (and forgive me for not remembering their names) who talked about being a terrible student until he had my Grandpa as a teacher for the 5th and 7th grade and how he learned lessons from him in confidence and how to be a better boy, and therefore man, to the man who said he’s known two great men, his father and my Grandpa, and how he named one of his son’s after Grandpa. This man a student of his so long ago. There were stories of him as mentor to new teachers, a friend when he worked as an accountant before he was a teacher, as principal and in his role as assistant superintendent of public schools. Story after story of his heart, his integrity, his willingness to be a friend, and to help someone out. Stories about the quiet unflinching discipline that made people want to be better, to do better. Stories of his honesty, his being quiet and gentle, of him as a man of high expectations and a big heart. Stories of how people in his work life knew the most important thing to him was his family. I was, as I think we all were, floored by the outpouring. Person after person stood. It went on for a while. And as it did I think my heart actually grew. Swelling with the emotion of it, the wave. Swelling with pride.
It’s not that I was surprised by it, it’s just that my experience of Grandpa was/is as a member of his family. My time with him was always family time. He never spoke of his work. I mean, never. Not to me. The closest I ever got to that was occasionally hearing he and Grandma discuss something or another about his work when he was assistant superintendent and that was always fleeting. Grandma bringing something up, asking a question, Grandpa answering, and then moving on to being with us. Attention on us. Attention on his family. So I never thought of him really as a working guy, which of course he was. And when people starting standing up, starting talking about him, bells went off inside, along with a swell of pride. Because, of course, he was the same man everywhere he went. And because he was the same man, he had the same effects on kids he taught in school, kids he had to discipline in school, people he hired and mentored as teachers, friends he made along the way. He was the same man everywhere he went, and being that man, he touched so many lives, more than I imagined.
I sat there, tears coming down, feeling an overwhelming sense of him, as a whole man, and along with that feeling an intense sense of honor and pride at being his granddaughter and all that entails. We have a legacy. This beautiful amazing legacy left to us by both our Grandpa and our Grandma. It’s such a privilege to be a part of that legacy, to be a part of this family, and also such a responsibility. We must use those lessons taught to us so well. We must honor his memory, and the memory of our Grandma, by being the best people we can. By living the best lives we can. We must continue to put out that energy of acceptance, warmth, laughter, expectation, guidance, heart, adventure, good will, integrity, humor, and abiding love of life and family. We must. It would be his wish, his expectation, and that expectation is strong, still. He and Grandma would want us to continue on with love of life, love of family. And, they would be, and I feel are, proud of us. Proud of the people we are. The people they made of us. Just as we, to the last of us, are oh so proud to be Grandpa and Grandma’s children and grandchildren and great grandchildren and great great grandchildren.
I am proud, and honored, to be their granddaughter. More than I can articulate adequately here. There really aren’t enough words to describe it. And maybe that’s OK. Maybe my Uncle Tom’s words, said at our family gathering after the memorial, say it all, “My Dad is a rock star”. And yes, yes he was, and still is to all of us.
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.
So Karen and I realized we’ve lived here just about five weeks. We are finally getting things sort of settled, though there’s still some wallpaper border to remove and definitely painting to be done. I took a little tour of the house, snapping shots as I went, so that we could share what the place is looking like now. Keep in mind… the dots in the office are going, as is the wallpaper border in the dining room, as is the color in the media room and the spare bedroom. We have a few more things to hang on the walls… including a tryptic we just ordered of a shot I took of Chicago that’s going to hang down in the media room. Can’t wait to get that baby. Will be cool. Obviously we haven’t hung anything up in the office or the spare bedroom either, again due to the fact that we haven’t painted anything yet.
Uh, the picture quality isn’t the best… I was doing this on the fly and not really paying attention. My honey will hate that the bed isn’t fully made in the bedroom photos and that there are blankets thrown about down in the media room as well as in the living room, but hey… this is how we live most of the time.
Our yard is fantastic. Pretty big. We like it. Our garage, which I didn’t shoot at all, is about a car and a half. Plenty of room for the car and for tools, storage, and such. I’ll shoot that next time I make some rounds. I also didn’t shoot the side yard, street side, that’s beautiful. Oh well… looks like I left a few things out. Next time…
Martin called our style bohemian. We like it. He’s right. We don’t like any particular style. We like what we like and buy what we like and somehow it all fits together.
When and as things get painted and wallpaper gets removed I will take more photos. You know, when the house is completely done. I’ll try to make those more house beautiful. For now… this is it… our place in Illinois.
I just read this post on Facebook and had to repost it here on my blog. It had me laughing so hard I was was crying. Thanks Margaret for posting it there and Jim (whoever you are) for writing it.
Why Can’t I Own a Canadian?
by Margaret Shelburne Reed on Friday, February 11, 2011 at 7:46pmDr. Laura Schlessinger is a radio personality who dispenses advice to people who call in to her radio show. Recently, she said that, as an observant Orthodox Jew, homosexuality is an abomination according to Leviticus 18:22 and cannot be condoned under any circumstance. The following is an open letter to Dr. Laura penned by a east coast resident, which was posted on the Internet. It’s funny, as well as informative:
Dear Dr. Laura:
Thank you for doing so much to educate people regarding God’s Law. I have learned a great deal from your show, and try to share that knowledge with as many people as I can. When someone tries to defend the homosexual lifestyle, for example, I simply remind them that Leviticus 18:22 clearly states it to be an abomination. End of debate. I do need some advice from you, however, regarding some of the other specific laws and how to follow them:
When I burn a bull on the altar as a sacrifice, I know it creates a pleasing odor for the Lord – Lev.1:9. The problem is my neighbors. They claim the odor is not pleasing to them. Should I smite them?
I would like to sell my daughter into slavery, as sanctioned in Exodus 21:7. In this day and age, what do you think would be a fair price for her?
I know that I am allowed no contact with a woman while she is in her period of menstrual uncleanliness – Lev.15:19- 24. The problem is, how do I tell? I have tried asking, but most women take offense.
Lev. 25:44 states that I may indeed possess slaves, both male and female, provided they are purchased from neighboring nations. A friend of mine claims that this applies to Mexicans, but not Canadians. Can you clarify? Why can’t I own Canadians?
I have a neighbor who insists on working on the Sabbath. Exodus 35:2 clearly states he should be put to death. Am I morally obligated to kill him myself?
A friend of mine feels that even though eating shellfish is an abomination – Lev. 11:10, it is a lesser abomination than homosexuality. I don’t agree. Can you settle this?
Lev. 21:20 states that I may not approach the altar of God if I have a defect in my sight. I have to admit that I wear reading glasses. Does my vision have to be 20/20, or is there some wiggle room here?
Most of my male friends get their hair trimmed, including the hair around their temples, even though this is expressly forbidden by Lev. 19:27. How should they die?
I know from Lev. 11:6-8 that touching the skin of a dead pig makes me unclean, but may I still play football if I wear gloves?
My uncle has a farm. He violates Lev. 19:19 by planting two different crops in the same field, as does his wife by wearing garments made of two different kinds of thread (cotton/polyester blend). He also tends to curse and blaspheme a lot. Is it really necessary that we go to all the trouble of getting the whole town together to stone them? – Lev.24:10-16. Couldn’t we just burn them to death at a private family affair like we do with people who sleep with their in-laws? (Lev. 20:14)
I know you have studied these things extensively, so I am confident you can help. Thank you again for reminding us that God’s word is eternal and unchanging.
Your devoted fan,
Kev and I went to the airport last night to meet Karen, who was returning from a business trip. She didn’t expect us as she’d driven to the airport, had a car in long term parking (the trip was a Tuesday to Thursday thing), and was expecting to drive herself home. We thought we would surprise her and then I could drive her home. Both Kev and I knew she would be very tired, still on East coast time, having not slept well while she was away. So we drove in to meet her plane, which landed minutes before ten. She was surprised. It was a great thing to do. And, as planned, I drove her home.
I’m smiling about this…. this is a thing the Tam before leukemia would do. This is a thing the Tam with leukemia in full remission did. This is something from my normal life.
People complain about normal, about it being mundane, ordinary… boring. I might even have said things like that in the past. I never will again. Normal, to me, is great. It’s good. I have said over and over in the last month or so that I just want to be able to get back to leading a normal life. Living a normal life. Yes, I know I have maintenance for another 23 months. I know that. But my maintenance isn’t that bad. I’m starting to get into a routine with it. I can lead a normal life doing it. What’s normal you ask? It’s doing the dishes and laundry without feeling exhausted during and after. It’s going to the grocery store with my honey and not having to wait in the car. It’s attending functions with family and friends and going to movies and taking trips and getting out taking my cameras almost everywhere I go. Normal is not having everyone think of me as the girl with leukemia. It’s being myself, coming back to myself, again. Normal. What a fantastic lovely word that is. What a glorious way to be being normal is.
A quiet day at the abode today. I did take a shower, which was nice, and Karen went to the store, the bank, and the pet store (yay! bullies for the pups… they are SO happy!). Not much going on. Tomorrow is the next blood test which will tell us where I am. I was feeling slightly punky this morning… not terrible, just a bit punky, but am feeling much better this afternoon. Actually, I felt much better after I ate lunch. I’ve found eating something every couple of hours helps a lot. So those sweet and salty bars Karen picked up have come in really handy.
For some reason today my words sound to me like blah blah blah blah… LOLOL It’s making me laugh. Guess this means the entry for today is going to be short. Hope everyone out there is having a fantastic day!
Here I am, still sitting in the family room, but things have changed. I feel myself starting to relax (a soak in the hot tub this afternoon helped that a bit). I’m still tense, and think that the tension will take a while to fully leave me, but it’s starting to ease. I walked on the treadmill for 25 minutes this morning and will do another round on it this evening as well. I got some good sleep last night and felt much better today… more energy. Granted, I could, possibly and maybe… ya think?, feel better today because of the great news we got yesterday. That is still sinking in. Remission…. wow.
I’m sitting here in our family room typing on my new laptop (thanks honey!). My sweetie is sitting out in back at our little table, under the umbrella, working. Nice place to work. Mom just took the dogs for a walk. It’s supposed to be hot-ish today. Near 90. I’m having a decent day.
My days go like this, pretty much…. sleep to 8:30 or 9:00 (so nice to be able to sleep after not really being able to sleep in the hospital for so long), get up and come into the family room. Get set up with pillows and a blanket (Debbie… I’m using the purple blanket you made for me… I love it. Thank you so much!), tv on, pre-meds (anti-nausea) taken. Breakfast (consisting of either cheerios or cream of wheat or rice) about a half an hour or forty five minutes later accompanied by the 5 pills of ATRA (oral chemo). Then it’s just a day of sitting watching tv, playing on the computer, etc. I get some snacks, I get lunch, then at dinner time I get, yep… more pre-meds followed about a half an hour or forty five minutes later by dinner (lately that’s been steamed smashed potatoes with broccoli and cottage cheese on it) and 5 pills of ATRA. I’m taking 10 a day. Then, after watching a movie with the family, bed time at 10:00 ish. I’m feeling OK. Stronger than I did, definitely, before this whole thing started, but not nearly what normal would be. Weird to have this very low level of energy. But again, it’s better than it was when this whole thing started.
So it’s supposed to get up into the 90′s this week. Good thing my honey went and got us an air conditioner. We are set up in the bedroom with it. Thank goodness. If it gets too hot in the family room during the day (and this is usually the coolest room in the house normally) we can move this show to the bedroom during the real heat of the day. It’s the small things in life that make it, ya know? I’m grateful for that air conditioner. I’m grateful for my honey, for my Mom walking the dogs, for this blanket, for the friends and family who keep sending me notes and holding me in their hearts. I’m holding all of you back you know… hanging on tight and feeling the warmth of all that love. Brings a warmth to my soul much warmer than the heat that will come in the next few days. MUCH warmer.
I realized that the further I get away from the start of all of this the more fuzzy it gets. My solution…. Recap. This is more for me than for all of you, but again… My blog. You can skip to the next post if you don’t want to wade through how short or long this becomes.
May 18…. Doctor for sinus.
May 19-24…. Atlanta – much more tired than I should have been
May 25 – back at work
May 26 – dentist for abcessed gum procedure
May 27 – called advice nualrse and ended up with another round of antibiotics for sinus (never saw a doctor)
May 28 – May 31… Home sick
June 1… 4:00 PM…. Called advice nurse in afternoon after not being able to walk to kitchen in house without feeling like I was going to hurl from fatigue. Was told by advice nurse after relaying my specific symptoms that I should go to urgent care.
June 1…. 5:15 PM…. Arrive urgent care. See doc, Eric Martin, at 7:45. He listens to symptoms, looks at me, talks to Karen about my color, etc., and gets blood tests done.
June 1…. 9:30 PM… Doc comes in and says, “girl, you are really sick. I’m checking you into the hospital and you are going by ambulance. They will have to do a lot of tests, a lot of tests, and then they will let you know for sure what’s going on.”
June 1…. 10:00 PM… Ambulance comes and picks me up.
June 1… 10:30 PM… Arrive at Sunnyside and get taken directly to Oncology floor and room 442.
June 2…. 2:00 AM… First transfusion begins
June 2… 1:00 PM…. Bone marrow biopsy
June 3…. Second tranfusion
June 3…. 4:00 PM…. Dr. Bigler came in and talked to us, finally giving the news that, “my marrow was chalk full of APL Leukemia”. I then say…. OK, what do we do about it. What’s next.
June 3….. 6:00 PM…. First round of ATRA chemotherapy pills
June 4…. 8:00 AM…. Second round of ATRA
June 4…. 10:30 AM…. Muga scan (nuclear scan of heart to make sure my heart was strong enough for the ATRA regimen)
June 4…. Noon…. First IV Push of chemotherapy med Idarubicen
June 5…. ATRA continues morning and night
June 5… IV site fails…. Other attempts made and then picc line decision made
June 6…. Third transfusion
June 6… ATRA continues…. Second IV push
June 7…. ATRA continues morning and night
So many more things happened, and continue to happen, in the course of all of this…. So Many talks with fantastic nurses and doctors answering our questions, giving us lessons on what this and that means, taking a shower without being able to use my right arm because the picc line is in that side, pills for all sorts of things, eating on time, getting vitals done often, measuring my liquids in and out, great talks with Karen, mom, and Kev, having Saline IV sometimes, getting my own clothes, so much love pouring in from family and friends…..
And that my friends is a non-comprehensive recap!
I have leukemia. Damn. Shocked I am, still. Just found out two days ago. It was like slow motion. I’m in the hospital bed sore as hell after having the bone marrow biopsy (which hurt like a son of a bitch by the way) and in comes who is now my very own nice oncologist to ask me tons of questions about my life and symptoms before getting to that day… And then he says, in a very straightforward manner…. Your marrow is very full of Acute Promyelocytic (APL) Leukemia. It was like his mouth was moving there for a second and nothing was coming out, even though I heard everything he was saying. I managed to stay calm, though everyone else in the room started crying. That’s OK. They love me and were/are afraid. The doc went on to say it was good case bad case. Very aggressive leukemia but if I handle it all well in the first month, meaning I don’t have some bad infection or other catastrophic event, it’s got a 95% cure rate. I am very vulnerable to bleeding and infection. He was great actually, my now oncologist. I have an oncologist. Shit.
So the adventure continues and will for a long time to come. There are rounds of oral and IV push chemo, more bone marrow biopsies (thrilling), more chemo, blood draws, meds of other kinds, blood transfusions (I’ve had three so far and really look forward to them… Is that some kind of Vampire wrong? LOL), hours of hanging out in the oncology ward being told I’m now “one of the family” here (by one of the nurses who, with the exception of one, have all been awesome by the way) because this first stay may be a month long, and today…. A picc line. Good thing, weird experience. Nothing like having a line put in your upper arm and then pushed all the way into you to stop in the artery just above your heart. It involved ultrasound and then a follow up x-ray to make sure it was in the right spot. My comment… It was like being a pipe that was getting cleaned out. I felt it, sort of, but it wasn’t really painful. The great thing about a picc line… It’s an in and out port. They can draw blood from it and administer all IV drugs into it. No more sticks. I look so purple right now after having three IV sites (and a fourth they couldn’t make work) either get too old to use or go bad. Not to mention the spots they’ve had to draw blood from every day. I basically am not clotting like I should be and so any trauma causes bruises more purple than anything I’ve ever seen. Spectacular color really. The Picc will keep me in long term business and from, hopefully, getting any more bruising going on. I need to know what color I was before all this started. Not purple or the yellow color the rest of my skin has become (unless I’ve been recently transfused… Yep, vampire talk again), but the nice rosy color I remember once possessing. Yeah, that color. I know I will see it again.
So time to post this rambler. I am going to take a stroll around the unit, wearing a mask and pulling along my little buddy (not Karen…. Though she’s coming with me of course… No, the IV saline I have running into my picc line right now.) I have to have the saline to make sure there’s enough liquid in me to help wash out the residual poison of the chemo they are giving me. IV chemo push number two tomorrow. Stay tuned…..
I haven’t posted in ages. I’m lame. And exactly how many times have I said that after not posting for ages? Many.
So much in life has happened recently… Since Thanksgiving really. Thanksgiving with friends, then Karen’s illness and hospitalization, then her recovery, then our time in Chicago over the holidays which included Mary and Martin’s wedding, then back to work, then the fantastic news that we will be grandparents (yep…woo hoo!!! Mary and Martin are expecting a little bambino!! Yay!!!!) in September, and then my decision to… to… I can barely say it… quit my job so we can run off to England and be there, for a few weeks, before and after the little monkey’s birth and then over the holidays and then…. I don’t even know what comes then. It’s a lot to soak up. On one hand… more exciting than I can say. On the other hand… it’s a bit sad, and scary, and it’s more exciting than I can say. I’m leaving this life I’ve known with certainty and moving into a life where there is no certainty, other than the fact that I will be doing something I love completely (taking photographs and writing) and loving my family. I guess that’s an amazing gift. I don’t even really have to guess about it, it IS an amazing gift.
I just got done uploading a ton of photos to Flickr covering the photo shoot, trip to San Francisco, progress on our addition, and our visit with Grandpa and Syd. I have a lot to blog about. I apologize again for the delay in all of this and hope to be back in the blogging swing this weekend. Thanks, everyone, for your patience. And… Stay tuned.