It was deja vue all over again. My oncologist sitting in front of me with a really perplexed look on his face. "Your counts were low two weeks ago and so we didn't do chemo, figuring they'd rebound but they haven't. In fact, they are lower than last week, down to .5. Your liver enzymes are also elevated again, which is unusual. Honestly, I really don't know why this is happening."
Bwwwwwwwwwwwwwwwwww. I blew out a deep, long breath and waited for him to continue, not loving that this was the second time my too-honest-for-his-own-good oncologist had told me that my situation was "unique" and "unusual" for his 30+ years on the job. They'd been huddling outside the office for a good 20 minutes, waiting for the input from my hematologist, and I was nervous about where this was going. [Little did she know, the worst was yet to come...]
"So, we are going to need to do a bone marrow biopsy to see what is going on. We'll schedule that for tomorrow and get this all figured out."
A BONE MARROW BIOPSY? Are you fucking kidding me?
I got teary, again, and sat there for a minute trying to collect myself and not go into full panic mode.
[Bone marrow biopsy means they are looking for something like leukemia, which can occur as a result of chemo. Shit, shit, shit! What if I have leukemia? What the hell am I going to do? There is NO WAY I can handle anything else, especially not leukemia. I am done. Forget it, I am quitting chemo. What does the taxol get me? Probably nothing. Shit, what if I have LEUKEMIA? Shit, shit, shit!]
And then got up and left, feeling incredibly numb.
Nick had gone up north with the kids for a week, my sister wasn't coming in until evening the next day and that put her in Ann Arbor after the biopsy. I had to face the procedure without Nick, and ask my dear friend Jenn to put off her family vacation to take me. And what if something was really wrong? What then?
So much of what wears you down in being ill, dealing with doctors, dealing with health issues is the not knowing. Not knowing how things will turn out, not knowing what the treatment will be like or how your body will handle it, not knowing what is happening when things go very, very wrong. The dreaded words are "X is happening and we don't know why." I think of my friend Ashley's stroke and my friend of a friend Maria's TBI that is causing new problems. I think of my friend Beth who deserves to get her zing back and my dear friend Anne in London who has just started on the path I began back in March. So fragile are these experiences where so much hangs on so many factors. It's easy to get frustrated at the doctor's not knowing or be angry with your body, but it's really just the reality of not knowing that leaves you paralyzed.
My sister and I also ventured into the conversation about what my longer term stats look like. I've never gone there, too scared to start googling about and the medical community is reluctant to raise those issues with patients (thank goodness) unless prompted by the patient's need to know. But Lisa had done her homework and so we started talking about what this means going forward. Basically, if I make it 5 years without a new cancer, I am in great shape. If not, not so much. Triple negative cancer has a higher recurrence spike, but if you can get through those five years, your future looks bright. It's a more aggressive cancer but responds really well to chemo. Five years out and you may live to be a hundred. It's the not knowing that eats you up.
Nick and the kids came back from camp on Friday night while I was still waiting for my tests to return and, in some ways, thinking about the five year frame gave me a new lens on things. We'd be talking about college and it would hit me that maybe I won't be here to see David go to college or Ava graduate from highschool and I would be awash in tears. I have never allowed myself to go there because I am convinced that everything is going to be fine. It is. But it makes me think a lot about what the next five years looks like for me, the way I want to live my life, the choices I make about work, where I live, who I am friends with, how I treat my body. Sometimes it's the not knowing that spurs you forward.
After a weekend of held breath, my bone marrow tests showed no signs of leukemia (which my oncologist said would have been really unusual (that word again!) at this stage of the game). My Absolute Neutraphil Count went through the roof thanks to the neupagin and my liver enzymes are going down. I have a meeting with my Infectious Disease doc next week to talk about the possibility of a virus and to see what can be done if it happens again. My oncology doc switched me from 4 sessions of big Taxol to 12 weekly sessions of smaller Taxol so it's easier on my bod and means I get to go to Providence for my sweet sister-in-law's wedding and I am hoping a conference in San Fran. I am negotiating now, damn it. Small wins while you can get them while living in the land of not knowing make a difference.
And, am watching my own personal shot clock get reset and run down, reset and run down.
12, 11, 10, 9, 8, 7, 6, 5, 4, 3, 2...1.
It's the not knowing that...
Friday, September 9, 2011
Monday, August 29, 2011
Jim Croce Would Have Written This Better In a Song
I looked at him quizzically as he dashed in, grabbed his jacket and bounded back outside. "Where are you going?" I called after him. "I'm going to go take a walk with your Mom!" he shouted back. Fear and delight mixed in my stomach, I watched as he jogged down the beach with a huge smile on his face and caught up with my mother who was walking in the other direction.
I'd only met him a few months before, a blind date set up by a mutual friend that neither of us thought would go anywhere. The night we met, it took about 3 minutes for me to be completely enchanted by him. He had a wonderful, open smile, an infectious laugh and an incredibly curious mind. We leaned our heads together in conversation, drank bourbons and scotches, talked until late in the night. As he opened the car door for me, I remember thinking "hmmm, this guy may be a keeper."
Ten years later, and many miles between, I look back on that girl and think "oh sister, you had no idea...no idea what an amazing gift you were getting."
When I play back those ten years, there are many points that stand out in my mind. I remember taking him to visit Dad and Hunter's grave and the gentle way he pulled aside the chairs from the marble floor slab bearing their names. I remember listening to him give the Father's Day talk at our Unitarian church about what fatherhood meant to him, so articulately and with such depth that he brought tears to the eyes of the minister herself. I remember, so clearly, the strong hug and calm reassurances that came when my sisters called to say Mom had lost movement in half of her body, that they didn't know what was wrong but that something, most definitely, was awry. "We'll get through this, honey, go be with your mom and the girls. Everything will be ok. We'll make it work." as he sent me off for weeks at a time to be with my family, never complaining about the extra burden of taking on the kids or re-arranging his life to accommodate my absence.
And I remember, most vividly, making that call, crouched in a quiet room at work, to tell him that the test was positive. "What test?" he said for just a second, then hearing my voice crack, realizing what I was talking about. We had both been assured that it was nothing, certainly just a benign mass, leaving neither of us to believe the news when it all came rushing home.
Standing on the other side of the glass watching him run down that beach, I could never have forseen the amount of love, patience and friendship that that man would show me over these ten years. I would never have imagined the hills and valleys we have come through, nor the mountain we are climbing now. The arguments we've had and the difficulties we've faced as a couple seem minor now in contrast to what we've been able to move through together. Truly, times like these give you a great perspective on the measure of a man.
I'm not foolish enough gamble on predictions of the future, but I know that no matter what happens, I will never be able to repay this good, solid, sweet man for his kindness and love during this time...never in a million years.
Nothing I write here can really do it all justice. So, I will just say I love you, Nick. And thank you.
I'd only met him a few months before, a blind date set up by a mutual friend that neither of us thought would go anywhere. The night we met, it took about 3 minutes for me to be completely enchanted by him. He had a wonderful, open smile, an infectious laugh and an incredibly curious mind. We leaned our heads together in conversation, drank bourbons and scotches, talked until late in the night. As he opened the car door for me, I remember thinking "hmmm, this guy may be a keeper."
Ten years later, and many miles between, I look back on that girl and think "oh sister, you had no idea...no idea what an amazing gift you were getting."
When I play back those ten years, there are many points that stand out in my mind. I remember taking him to visit Dad and Hunter's grave and the gentle way he pulled aside the chairs from the marble floor slab bearing their names. I remember listening to him give the Father's Day talk at our Unitarian church about what fatherhood meant to him, so articulately and with such depth that he brought tears to the eyes of the minister herself. I remember, so clearly, the strong hug and calm reassurances that came when my sisters called to say Mom had lost movement in half of her body, that they didn't know what was wrong but that something, most definitely, was awry. "We'll get through this, honey, go be with your mom and the girls. Everything will be ok. We'll make it work." as he sent me off for weeks at a time to be with my family, never complaining about the extra burden of taking on the kids or re-arranging his life to accommodate my absence.
And I remember, most vividly, making that call, crouched in a quiet room at work, to tell him that the test was positive. "What test?" he said for just a second, then hearing my voice crack, realizing what I was talking about. We had both been assured that it was nothing, certainly just a benign mass, leaving neither of us to believe the news when it all came rushing home.
Standing on the other side of the glass watching him run down that beach, I could never have forseen the amount of love, patience and friendship that that man would show me over these ten years. I would never have imagined the hills and valleys we have come through, nor the mountain we are climbing now. The arguments we've had and the difficulties we've faced as a couple seem minor now in contrast to what we've been able to move through together. Truly, times like these give you a great perspective on the measure of a man.
I'm not foolish enough gamble on predictions of the future, but I know that no matter what happens, I will never be able to repay this good, solid, sweet man for his kindness and love during this time...never in a million years.
Nothing I write here can really do it all justice. So, I will just say I love you, Nick. And thank you.
I Jinxed Myself, You Know...
I wrote that post and, sure enough, got dinged again. Went in last Friday and my white count was lower than the week before. They put me on another round of Neupagin and I am trying not to totally freak out that this is a symptom of something greater. But, on that note, please keep me in your thoughts, prayers, practice, etc tomorrow as I am heading back in for another blood test to see if things are ticking upwards as they need to.
Love to you all.
Love to you all.
Friday, August 19, 2011
Little Did They Know...
Years ago, my mother, Nick and I went to go see the film Shackleton's Adventure, the story Sir Ernest Shackleton's now-legendary 1914-1916 British Imperial Trans-Antarctic Expedition. It's an amazing film, narrated by Kevin Spacey who uses a VERY SERIOUS, British-ish voice that just tells you that SHIT IS GOING TO HAPPEN. And it does, brothers and sisters, yes it does.
A bit of description from the internetz: After five months of journeying, 28 men became stranded as their ship became trapped in pack ice. After eight months of waiting through the Antarctic winter, by October, encroaching pack ice crushed the ship like an eggshell. Needless to say, the story gets worse from there...much worse. Spacey peppers his narration continuously with ominous lines like "little did they know, the worst was yet to come."
We walked out at the end of the film, each of us completely exhausted from watching the relentless hell these 28 men had to endure. Exhausted and amazed at their resilience.
Not to put going through chemo on the same level as enduring the Antartic in the dead of winter, but sitting in the dr.'s office on Tuesday, I felt Kevin Spacey's voice in my head, And little did they know, the worst WAS YET TO COME. (duh! duh! DUH!).
So this week, we celebrated the halfway done mark and were supposed to launch into treatment #5 and a switch to Taxol. The last two treatments on AC have been pretty sucky from a feeling-the-effects perspective and so I am simultaneously happy to move on to a new drug and completely petrified of the side effects. Eyebrows and eyelashes? Gone. Feeling in fingers and toes?...hmmm, well lots of folks get neuropathy and about 5% never regain sensation again. Fingernails? Probably going to get really ugly and maybe fall off. And how about the delivery of the drug? Well, about 10% have a pretty serious allergic reaction sitting in the chair.
I sat there thinking about the risks and the gambles. I sat there thinking "I only have four more of these left and then I am done". I sat there and thought that my vanity and love of the use of my hands means something to me. I sat there and thought about the worst being yet to come. And then I realized that the worst part is not having a choice. You are in it. It's done. You move forward. The other options (a 30% chance of getting breast cancer somewhere else in your body = metastasized cancer) are not simply not palatable.
So instead you go out for dinner and drinks with wonderful friends to celebrate the midpoint. You laugh and cry a little bit with these friends, you tell stories about what life was like before and after this happened and you realize that it's worth every single bit to get to stay around to be with such wonderful people.
Friends and loved ones lift you through these times. I have felt angry, I have felt sad and depressed and more than a little lost, but never once, not once, have I felt alone. And that is pure gold.
Today I went in for the infusion only to be told that my counts are too low and that I am going to need to delay for some yet-to-be-determined period of time (likely a week). The thought of delaying puts me in a really bad place (more time? I want to get this DONE) but the idea of having a somewhat-ok-feeling week with my husband (and no kids!) might be something that I really need.
Yes, the worst, in some ways, may be yet to come. I hope not, but I won't know until I get there. And, Shackleton's crew of 28 men? They all made it home, every one. Working together, they pulled each other through. If they could manage, with your help, somehow I think I can too.
A bit of description from the internetz: After five months of journeying, 28 men became stranded as their ship became trapped in pack ice. After eight months of waiting through the Antarctic winter, by October, encroaching pack ice crushed the ship like an eggshell. Needless to say, the story gets worse from there...much worse. Spacey peppers his narration continuously with ominous lines like "little did they know, the worst was yet to come."
We walked out at the end of the film, each of us completely exhausted from watching the relentless hell these 28 men had to endure. Exhausted and amazed at their resilience.
Not to put going through chemo on the same level as enduring the Antartic in the dead of winter, but sitting in the dr.'s office on Tuesday, I felt Kevin Spacey's voice in my head, And little did they know, the worst WAS YET TO COME. (duh! duh! DUH!).
So this week, we celebrated the halfway done mark and were supposed to launch into treatment #5 and a switch to Taxol. The last two treatments on AC have been pretty sucky from a feeling-the-effects perspective and so I am simultaneously happy to move on to a new drug and completely petrified of the side effects. Eyebrows and eyelashes? Gone. Feeling in fingers and toes?...hmmm, well lots of folks get neuropathy and about 5% never regain sensation again. Fingernails? Probably going to get really ugly and maybe fall off. And how about the delivery of the drug? Well, about 10% have a pretty serious allergic reaction sitting in the chair.
I sat there thinking about the risks and the gambles. I sat there thinking "I only have four more of these left and then I am done". I sat there and thought that my vanity and love of the use of my hands means something to me. I sat there and thought about the worst being yet to come. And then I realized that the worst part is not having a choice. You are in it. It's done. You move forward. The other options (a 30% chance of getting breast cancer somewhere else in your body = metastasized cancer) are not simply not palatable.
So instead you go out for dinner and drinks with wonderful friends to celebrate the midpoint. You laugh and cry a little bit with these friends, you tell stories about what life was like before and after this happened and you realize that it's worth every single bit to get to stay around to be with such wonderful people.
Friends and loved ones lift you through these times. I have felt angry, I have felt sad and depressed and more than a little lost, but never once, not once, have I felt alone. And that is pure gold.
Today I went in for the infusion only to be told that my counts are too low and that I am going to need to delay for some yet-to-be-determined period of time (likely a week). The thought of delaying puts me in a really bad place (more time? I want to get this DONE) but the idea of having a somewhat-ok-feeling week with my husband (and no kids!) might be something that I really need.
Yes, the worst, in some ways, may be yet to come. I hope not, but I won't know until I get there. And, Shackleton's crew of 28 men? They all made it home, every one. Working together, they pulled each other through. If they could manage, with your help, somehow I think I can too.
Saturday, August 6, 2011
Fermata
A fermata (also known as a hold, pause, colloquially a birdseye, or as a grand pause when placed on a note or a rest) is an element of musical notation indicating that the note should be sustained for longer than its note value would indicate. Exactly how much longer it is held is up to the discretion of the performer or conductor, but twice as long is not unusual.
In essence, the fermata steals time.
*************
I was really embarrassed when the tears sprang to my eyes. Everyone got quiet as I stared at the floor and tried to collect myself. I glanced up and looked over at Nick with pleading eyes and face mirrored a my sadness and concern, but wasn't budging either. Then heard my oncologist say "Don't blame him, blame me, I'm the one that's telling you that you can't go."
I was supposed to be heading to Chicago in a week for an overnight trip with my team from work. A wonderful two-day design brainstorm with a fantastic design firm. It was a crushing thought. This is why I do the work I do, these are the experiences that feed me and propel me forward in my learning. It was not only something that I was looking forward to, but also something that made me feel normal during this time of non-normal living.
My doctor had made a good point. I would be staying by myself...what if I spiked a fever in the middle of the night? What if I couldn't get in touch with my team mates or him? I wouldn't have any data to share as I showed up at a Chicagoland emergency room. And me, with a problem after every chemo to date was someone he didn't want far away. We were switching things up again, better to play it safe and stay put.
He was right, but it was maddening. I started this process hearing from friends whose relatives had gone through chemo unscathed, one of two weathering it so well that they didn't even tell people at work that they were undergoing treatment. My expectation was that I would just live my life the way it was with this little inconvenience happening on the side. I know it sounds ridiculous, but for those of you who know me well, you aren't surprised. I power through, damn it. And when I can't, it's a shock.
Letting go of that trip really cause me to think about what breast cancer has brought to my life. It's like someone has punched a huge pause button. On the rough side, it's the hold on the phone to an important conversation you want to get back to. On the good side, it's the fermata, holding of note for a time that you see fit, knowing you can move on to the next beautiful combination of notes when the time is ready.
It's taken me over five months to get to this place. Five months to finally realize that I need to let go of what I thought was going to happen and just be. To feel like a bug trapped in the amber sometimes. To end that last note (the days before I got my diagnosis) and just hold it until I can resume. It's stolen time, yes, but stolen time that will give me time in the future.
The reality is I never believed I would have cancer at such a young age and I don't think I have ever come to terms with what it and it's treatment has and will mean in my life.
I think I am still in denial, to some degree, of how big this is and what it means.
Allowing that in would have made/may still make me insane. But, I am coming into an understanding of what I am in, right now.
But time is tricky. If you are like me (or the old me), you count the minutes, you look at the long haul, you make plans, you wait. In the fermata, you try to sit with the pause, you begin to realize that you can't fight what comes, you pay attention to what is around you. You are a hybrid being with one foot in the future (4 more to go! 5...6...7...8!) and you mind and body in the very real and addled present, forcing you to sit, very firmly, where you are.
It's been years since I have considered getting a tattoo, but I may have found the right one to remind me of this time. Just a small one, inside my wrist, to remind me of what I have learned here, how important it is to be, to rest, to hold that note for as long as I need to before moving on composing the music of my life. The gift of memory and mindfulness, movement and pause.
In essence, the fermata steals time.
*************
I was really embarrassed when the tears sprang to my eyes. Everyone got quiet as I stared at the floor and tried to collect myself. I glanced up and looked over at Nick with pleading eyes and face mirrored a my sadness and concern, but wasn't budging either. Then heard my oncologist say "Don't blame him, blame me, I'm the one that's telling you that you can't go."
I was supposed to be heading to Chicago in a week for an overnight trip with my team from work. A wonderful two-day design brainstorm with a fantastic design firm. It was a crushing thought. This is why I do the work I do, these are the experiences that feed me and propel me forward in my learning. It was not only something that I was looking forward to, but also something that made me feel normal during this time of non-normal living.
My doctor had made a good point. I would be staying by myself...what if I spiked a fever in the middle of the night? What if I couldn't get in touch with my team mates or him? I wouldn't have any data to share as I showed up at a Chicagoland emergency room. And me, with a problem after every chemo to date was someone he didn't want far away. We were switching things up again, better to play it safe and stay put.
He was right, but it was maddening. I started this process hearing from friends whose relatives had gone through chemo unscathed, one of two weathering it so well that they didn't even tell people at work that they were undergoing treatment. My expectation was that I would just live my life the way it was with this little inconvenience happening on the side. I know it sounds ridiculous, but for those of you who know me well, you aren't surprised. I power through, damn it. And when I can't, it's a shock.
Letting go of that trip really cause me to think about what breast cancer has brought to my life. It's like someone has punched a huge pause button. On the rough side, it's the hold on the phone to an important conversation you want to get back to. On the good side, it's the fermata, holding of note for a time that you see fit, knowing you can move on to the next beautiful combination of notes when the time is ready.
It's taken me over five months to get to this place. Five months to finally realize that I need to let go of what I thought was going to happen and just be. To feel like a bug trapped in the amber sometimes. To end that last note (the days before I got my diagnosis) and just hold it until I can resume. It's stolen time, yes, but stolen time that will give me time in the future.
The reality is I never believed I would have cancer at such a young age and I don't think I have ever come to terms with what it and it's treatment has and will mean in my life.
I think I am still in denial, to some degree, of how big this is and what it means.
Allowing that in would have made/may still make me insane. But, I am coming into an understanding of what I am in, right now.
But time is tricky. If you are like me (or the old me), you count the minutes, you look at the long haul, you make plans, you wait. In the fermata, you try to sit with the pause, you begin to realize that you can't fight what comes, you pay attention to what is around you. You are a hybrid being with one foot in the future (4 more to go! 5...6...7...8!) and you mind and body in the very real and addled present, forcing you to sit, very firmly, where you are.
It's been years since I have considered getting a tattoo, but I may have found the right one to remind me of this time. Just a small one, inside my wrist, to remind me of what I have learned here, how important it is to be, to rest, to hold that note for as long as I need to before moving on composing the music of my life. The gift of memory and mindfulness, movement and pause.
Friday, August 5, 2011
There are these days that are the days.
First the health update: Chemo #3 went rather well for the most part. We switched up the Neulasta situation and moved to the 10-day shot sequence of Neupagin, which lessened the horrible heaviness in my chest. I had a couple of rough days in there, but deal-able. Shooting up Neupagin the parking lot of David's baseball game is something I won't forget too soon. That and the insert says "do not shoot into scar tissue or stretch marks." Um, on this belly? That gives us a lot less real estate, people. I'm just sayin'.
Today is the last AC and then on to the extremity-numbing Taxol (which scares the bejeezus out of me) for four more and then I am DONE. Want to know what I am going to do after? I am going to have a big, fabulous glass of good wine. I am going to eat an amazing meal. I am going to work out. I am going to go somewhere wonderful with my husband. I know I am only half way there, but I can see the light. I can. I just need to remember that it's there.
Now a story:
"No, No, I can do it myself" she says as she pushes off with one foot, wobbles a bit and then clicks into the rhythm of movement. I stand back and watch my sturdy, spirited 5 year old girl grasp and master the balance and physics of the bike. At my elbow, David says "Just one more run, Mom, how about it?" and we move his bike onto the grass and I run beside him, lightly grasping onto his shirt, as he slowly and methodically pedals in a wide circle. Ava likes the flatness of the pavement and working without a net between she and the skin-skinning bitumen. David's skill improved 1,000 fold when we moved onto the field. "It would be like falling during soccer", he says, "or not even that bad." No sooner he says that and he's sailing along, free of the fear that had brought tears to his eyes just an hour before.
I woke up yesterday morning with a head full of steam about teaching the kids to ride their bikes. Tomorrow was a chemo day, I was going to feel crappy next week, time was running out on our second goal (first goal = learning to swim, second goal = learning to ride a bike), SuperNanny Steph was there to help, it was only going to be 80 degrees... so I closed my computer at 5, rounded up the kidlins and Stephanie and off we went.
It must have been a pretty funny sight, me in my baldiness/do-rag, skirt and mary jane shoes running up and down the parking lot grasping onto the bike and shouting instructions. Sweating buckets and realizing about 30 minutes in that I hadn't taken off the horrible, weighty foobs which were adding to the slog. In fact, one guy stopped for quite a bit to watch. He had a huge smile on his face so I suspect he was going to offer a compliment, but who had the time to chat when there were kids to push.
Our dear friends, the Leos came over to find us too. Miriam and Andrew riding circles around David and Ava, luring them into their mini biker gang and shouting words of encouragement: "Think of something yummy like chocolate cake! Think of your friends! Think of good things! You can DO it!" We ran and rode, sweated, screamed our excitement, gave big hugs, did happy dances, encouraged each other. If it weren't such a trip and hysterical to hear and see, I would have been a pool of tears for the gentle sweetness of it all. Delicious.
Standing there with my friend Anne and our kids, I realized it was the first day in so long that I just felt like a regular mom to my kids. Not a sick mom, not a mom who is too tired or busy or down to do something, not a mom with cancer. Just a mom, and a mom who loves being there for these milestones in life, who loves hugging her sweaty, wonderful chickens after they accomplish something they are so proud of.
And then it hit me that by the grace of the universe, an early diagnosis and mostly just plain luck, I will be standing there for many more.
What luck, and luck it was that I caught this disease when I did.
And that nearly blew my mind.
You never know what will be handed to you. You never, never know.
So today, I am thankful for that little bit of time. The old normal in this temporary "new" normal. And I hope they will remember it too.
Today is the last AC and then on to the extremity-numbing Taxol (which scares the bejeezus out of me) for four more and then I am DONE. Want to know what I am going to do after? I am going to have a big, fabulous glass of good wine. I am going to eat an amazing meal. I am going to work out. I am going to go somewhere wonderful with my husband. I know I am only half way there, but I can see the light. I can. I just need to remember that it's there.
Now a story:
"No, No, I can do it myself" she says as she pushes off with one foot, wobbles a bit and then clicks into the rhythm of movement. I stand back and watch my sturdy, spirited 5 year old girl grasp and master the balance and physics of the bike. At my elbow, David says "Just one more run, Mom, how about it?" and we move his bike onto the grass and I run beside him, lightly grasping onto his shirt, as he slowly and methodically pedals in a wide circle. Ava likes the flatness of the pavement and working without a net between she and the skin-skinning bitumen. David's skill improved 1,000 fold when we moved onto the field. "It would be like falling during soccer", he says, "or not even that bad." No sooner he says that and he's sailing along, free of the fear that had brought tears to his eyes just an hour before.
I woke up yesterday morning with a head full of steam about teaching the kids to ride their bikes. Tomorrow was a chemo day, I was going to feel crappy next week, time was running out on our second goal (first goal = learning to swim, second goal = learning to ride a bike), SuperNanny Steph was there to help, it was only going to be 80 degrees... so I closed my computer at 5, rounded up the kidlins and Stephanie and off we went.
It must have been a pretty funny sight, me in my baldiness/do-rag, skirt and mary jane shoes running up and down the parking lot grasping onto the bike and shouting instructions. Sweating buckets and realizing about 30 minutes in that I hadn't taken off the horrible, weighty foobs which were adding to the slog. In fact, one guy stopped for quite a bit to watch. He had a huge smile on his face so I suspect he was going to offer a compliment, but who had the time to chat when there were kids to push.
Our dear friends, the Leos came over to find us too. Miriam and Andrew riding circles around David and Ava, luring them into their mini biker gang and shouting words of encouragement: "Think of something yummy like chocolate cake! Think of your friends! Think of good things! You can DO it!" We ran and rode, sweated, screamed our excitement, gave big hugs, did happy dances, encouraged each other. If it weren't such a trip and hysterical to hear and see, I would have been a pool of tears for the gentle sweetness of it all. Delicious.
Standing there with my friend Anne and our kids, I realized it was the first day in so long that I just felt like a regular mom to my kids. Not a sick mom, not a mom who is too tired or busy or down to do something, not a mom with cancer. Just a mom, and a mom who loves being there for these milestones in life, who loves hugging her sweaty, wonderful chickens after they accomplish something they are so proud of.
And then it hit me that by the grace of the universe, an early diagnosis and mostly just plain luck, I will be standing there for many more.
What luck, and luck it was that I caught this disease when I did.
And that nearly blew my mind.
You never know what will be handed to you. You never, never know.
So today, I am thankful for that little bit of time. The old normal in this temporary "new" normal. And I hope they will remember it too.
Saturday, July 16, 2011
Vignettes
The Meaning of Cake:
The new nanny candidate Stephanie was due any minute. Between the day's bustle of karate, swimming, shopping and running around, Ava and I stood in the kitchen catching our breath and talking about chocolate cake.
DING DONG!
All crazy curls and 5 year old drama, Ava yelled "I'll get it!", rushed to the door and flung it open to reveal not Stephanie, but a well-dressed man of Indian heritage whose puzzled look equaled that of Ava.
"Um, Mom?"
I walked to the door and the man looked at me, dashing in my neon-orange do-rag and obviously bald head, and asked "Are you Fran Loosen?"
"Well, yes I am."
"Then this is for you," he said as he handed me a brown craft paper cake box. "Best wishes and ENJOY!" His smile lit up and he turned and walked away.
I looked down to this:
I walked in the house carrying my box, a little dumbstruck. Ally sent me cake. Ally lives in Seattle. I was wanting cake right at that moment and Ally sent me cake and it came like magic in the middle of a day when I really needed a it. And then I started to cry.
Ava looked at me like I was insane, not so much because I was crying but because
"HOW DID SHE KNOW YOU WANTED CAKE RIGHT NOW, MAMA? HOW DID THAT HAPPEN?!"
And I laughed and looked at her through my tears and just said "Sometimes your friends know what you need, babygirl. And sometimes, like magic, things just happen."
*******
Detailing of Stuff:
Sometimes the things I write here I write because I hope if there is ever anyone out on the web trawling around looking at blogs related to the experience of breast cancer, they will pick up something about my medical treatment and experience that will help them on their journey. The problem with any illness is that information is weird, unpredictable, oftentimes not accurate or difficult to decode. It's really unclear how it's going to map to your life and your own experience, which makes you crazy as you work your way through symptoms and situations.
Starting on Sunday, I once again had difficulty with heaviness in my chest, the same as the last round of chemo. Combined with the freaky feeling of the new port (yes, you can feel the port in the neck...gross) and a dull ache re-occurring in my blood-clot arm, by Wednesday I was pretty freaked out. What if this was something bigger that we didn't catch last time? I had read a little bit about shortness of breath on the cancer boards, but nothing substantial so on Thursday morning I called the oncology office. The nurse sent me to triage who then sent me...yep, to the ER. The ER? Really? So we trundle in, me in my depressed white count state, to sit for 8 hours and go through countless tests to find out that I don't have a pulmonary embolism, no new blood clots (old have not totally resolved), no heart attack, no this, no that... which was all great. But the damn thing was at the end (very nice experience at the UM emergency room), the doc says "Yes, I talked to your oncologist and he said that in fact the Neulasta that you took on Saturday often causes feelings of heaviness in the chest."
Um, WHAT?
I just spent 8 hours and thousands of dollars in the ER for you to tell me that it's likely from my Neulasta shot?
Sure enough, I google "Neulasta chest tightness" sitting right there in the ER and it pops up on multiple sites. Ok, so why isn't this something that you could have told me last time? Or, maybe before I came in today? Because if you'd said "Hey, Neulasta causes these same sensations for folks" I would have saved the trip and felt a lot better about everything. Sigh.
That and it seems that I had a really tremendous bout of reflux that I didn't handle properly ('cause, um, I didn't know I had it), so my low white count self is trying to heal the etched away bit of my esophagus at the base of my neck. It's felt like someone has had their pointy finger drilling into the hollow of my neck for the past 5 days. For those of you that suffer from acid reflux or who have kids with GERD, I don't know how you do it. I feel like someone is trying to choke me every minute of the day. It's horrible.
Not sure where I am going with this other than to basically report out that things are fine, I am hanging in there adjusting meds, figuring out how it's working, trying to make sense of it all. Another chemo next Friday so keep me in your thoughts.
********
The Freaks in the Hood:
Finally, a bit of humor. I have taken to startling the neighborhood with my bald head. It's just too damn hot to sit with a scarf on all of the time, so often I just go without. And I am BALD these days. Which the regulars handle just fine, actually, and the kids in the neighborhood have gotten used to it and it's no big deal. Nick shaved his head last week, which was great and now we look like a pair of total freaks. The good news is that I suspect it would be very hard for us to have a real argument looking like this because it would just be too damn comical.
The best part was that on the day that he shaved his head we were standing outside with our friend Dave (who also shaves his head) just having a chat. Three totally bald people hanging out in the front yard shooting the breeze as a group of people (not from our neighborhood) came by walking their dogs. And, man, did we get the looks! Not until later did I realize that we must have looked like some sort of new Burns Park version of the Heaven's Gate cult. Two people is a coincidence, three...that's a group!
Unfortunately, Nick's head has had more practice being bald than mine has, so he doesn't have the same tan lines that I am sporting, which gives me a particularly bizarre look. Welcome to the neighborhood! We haven't gotten Ava and David to follow suit on the head shaving bit, but I may buy them the little fake bald head coverings just to get a picture. Ava's slightly horrified, but we all think it's pretty much in good fun.
Nothing much more to share from here. Thank you all for your continued love, thoughts, energy, prayers and support. Two down, six (seriously? shit!) to go. I am learning more and more each time. I feel enveloped in love even though the going is rough and there are many days I cannot believe that I am going to work through all of this. What will come, will come. I am just happy to have you with me on this journey.
*******
The new nanny candidate Stephanie was due any minute. Between the day's bustle of karate, swimming, shopping and running around, Ava and I stood in the kitchen catching our breath and talking about chocolate cake.
DING DONG!
All crazy curls and 5 year old drama, Ava yelled "I'll get it!", rushed to the door and flung it open to reveal not Stephanie, but a well-dressed man of Indian heritage whose puzzled look equaled that of Ava.
"Um, Mom?"
I walked to the door and the man looked at me, dashing in my neon-orange do-rag and obviously bald head, and asked "Are you Fran Loosen?"
"Well, yes I am."
"Then this is for you," he said as he handed me a brown craft paper cake box. "Best wishes and ENJOY!" His smile lit up and he turned and walked away.
I looked down to this:
I walked in the house carrying my box, a little dumbstruck. Ally sent me cake. Ally lives in Seattle. I was wanting cake right at that moment and Ally sent me cake and it came like magic in the middle of a day when I really needed a it. And then I started to cry.
Ava looked at me like I was insane, not so much because I was crying but because
"HOW DID SHE KNOW YOU WANTED CAKE RIGHT NOW, MAMA? HOW DID THAT HAPPEN?!"
And I laughed and looked at her through my tears and just said "Sometimes your friends know what you need, babygirl. And sometimes, like magic, things just happen."
*******
Detailing of Stuff:
Sometimes the things I write here I write because I hope if there is ever anyone out on the web trawling around looking at blogs related to the experience of breast cancer, they will pick up something about my medical treatment and experience that will help them on their journey. The problem with any illness is that information is weird, unpredictable, oftentimes not accurate or difficult to decode. It's really unclear how it's going to map to your life and your own experience, which makes you crazy as you work your way through symptoms and situations.
Starting on Sunday, I once again had difficulty with heaviness in my chest, the same as the last round of chemo. Combined with the freaky feeling of the new port (yes, you can feel the port in the neck...gross) and a dull ache re-occurring in my blood-clot arm, by Wednesday I was pretty freaked out. What if this was something bigger that we didn't catch last time? I had read a little bit about shortness of breath on the cancer boards, but nothing substantial so on Thursday morning I called the oncology office. The nurse sent me to triage who then sent me...yep, to the ER. The ER? Really? So we trundle in, me in my depressed white count state, to sit for 8 hours and go through countless tests to find out that I don't have a pulmonary embolism, no new blood clots (old have not totally resolved), no heart attack, no this, no that... which was all great. But the damn thing was at the end (very nice experience at the UM emergency room), the doc says "Yes, I talked to your oncologist and he said that in fact the Neulasta that you took on Saturday often causes feelings of heaviness in the chest."
Um, WHAT?
I just spent 8 hours and thousands of dollars in the ER for you to tell me that it's likely from my Neulasta shot?
Sure enough, I google "Neulasta chest tightness" sitting right there in the ER and it pops up on multiple sites. Ok, so why isn't this something that you could have told me last time? Or, maybe before I came in today? Because if you'd said "Hey, Neulasta causes these same sensations for folks" I would have saved the trip and felt a lot better about everything. Sigh.
That and it seems that I had a really tremendous bout of reflux that I didn't handle properly ('cause, um, I didn't know I had it), so my low white count self is trying to heal the etched away bit of my esophagus at the base of my neck. It's felt like someone has had their pointy finger drilling into the hollow of my neck for the past 5 days. For those of you that suffer from acid reflux or who have kids with GERD, I don't know how you do it. I feel like someone is trying to choke me every minute of the day. It's horrible.
Not sure where I am going with this other than to basically report out that things are fine, I am hanging in there adjusting meds, figuring out how it's working, trying to make sense of it all. Another chemo next Friday so keep me in your thoughts.
********
The Freaks in the Hood:
Finally, a bit of humor. I have taken to startling the neighborhood with my bald head. It's just too damn hot to sit with a scarf on all of the time, so often I just go without. And I am BALD these days. Which the regulars handle just fine, actually, and the kids in the neighborhood have gotten used to it and it's no big deal. Nick shaved his head last week, which was great and now we look like a pair of total freaks. The good news is that I suspect it would be very hard for us to have a real argument looking like this because it would just be too damn comical.
The best part was that on the day that he shaved his head we were standing outside with our friend Dave (who also shaves his head) just having a chat. Three totally bald people hanging out in the front yard shooting the breeze as a group of people (not from our neighborhood) came by walking their dogs. And, man, did we get the looks! Not until later did I realize that we must have looked like some sort of new Burns Park version of the Heaven's Gate cult. Two people is a coincidence, three...that's a group!
Unfortunately, Nick's head has had more practice being bald than mine has, so he doesn't have the same tan lines that I am sporting, which gives me a particularly bizarre look. Welcome to the neighborhood! We haven't gotten Ava and David to follow suit on the head shaving bit, but I may buy them the little fake bald head coverings just to get a picture. Ava's slightly horrified, but we all think it's pretty much in good fun.
Nothing much more to share from here. Thank you all for your continued love, thoughts, energy, prayers and support. Two down, six (seriously? shit!) to go. I am learning more and more each time. I feel enveloped in love even though the going is rough and there are many days I cannot believe that I am going to work through all of this. What will come, will come. I am just happy to have you with me on this journey.
*******
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