jennethink

BOOM

D-DAY ANNIVERSARY

Yesterday marked the 3^rd anniversary of my cancer diagnosis. Each year I reflect back on that time and I'm always struck by how thick and dark the dividing line is between the before and after. The calendar of my life seems to be divided into B.D. - Before Diagnosis and A.T. - After Treatment. So much has been colored by those months of care. And as each day clicks away and I get more and more distance from those days of chemical poisoning, I can see more and more of the effects of what happened after the B.D. and before the A.T.

I loved to draw when I was a kid. Still do, actually. To this day, one of my favorite activities is to color. I love everything about it. I love the thick smell of the crayons, especially ones that are all piled together. I love the waxy feel of crayon residue on my fatty part of my palm left over from dragging my crayon-clutched fist across a creation. I love scraping at the paper on the disappearing flattened tip of a crayon and using that tiny bullshit sharpener in the box to create a dull point on a used stick. I love using the same color to make both gentle light sweeps of color and thick heavy bold lines. Crayons rock. Versatile. Simple. Colorful. Once, when I was pretty little, a babysitter showed me how to lay down stripes of color on a piece of paper. She showed me how to use as many colors as I liked, in whatever random pattern I wanted. Then, when I had the paper filled, she showed me how to take the black crayon and cover it all up. Dark and thick I would lay the black crayon on its side and press a wax blanket of black over all the color. The harder I pressed, the darker the black. The darker the black, the quicker the colors would disappear. With each pressured sweep across the paper, the color would evaporate right before my eyes. Every pretty bright thing would be swallowed up, overtaken by blacknesss.

Before diagnosis, I had spent much of my life laying down bright strips of color. Family relationships – blue green. The Hub –yellow orange. My business – blue violet. Friendships – brick red. Other friendships – olive green. Still others – cornflower. My home – lemon yellow. The Kid – periwinkle, carnation pink, orange red. And the colors were beautiful. Even the burnt sienna and bittersweet. They worked. Messy in places, sure, but as a work of art, it was really coming together nicely. It's pretty easy to see where this is going. If B.D. was laying down color, then treatment certainly was The Black. 12 treatments. Six scans. 3 operations. Countless blood tests, needle sticks and saline flushes. And 1 very scary hospitalization. Each a very heavy sweep of a very black crayon. And with every pressured sweep, my color evaporated right before my eyes. Every pretty thing about me and my life seemed to be swallowed up, overtaken by blackness.

People still ask me if I was scared when I was diagnosed. They ask me what I thought about. Did I worry about dying? How did I handle the news? Did the diagnosis terrify me? And I have the same answer to every one of those questions. No. I was not terrified. No. I did not worry about dying. No. I didn't freak. But that was then. That was a B.D. reaction. And although I can't predict the future I can guess I would react differently a second time around. My A.T. reaction to a recurrence would most likely be different. There would be fear. There would be dread. And there would be panic. Not because cancer scares me more now but because treatment does.

It is black

And heavy

And it covers the color so completely even the memories of color fade.

The first time my babysitter told me how to color and cover, it was hard to convince me to do it. I didn't understand. Why would I want to make something beautiful only to cover it up with something ugly? I'm not sure how much convincing it took for me to finally give in. Eventually, I did what I was encouraged to do. I wasn't happy about it. But I did it. Of course, at the time, I didn't see the whole picture. I didn't know the final step. I didn't know something else was coming. I never imagined after the paper was engulfed in black she would pull a coin out of her purse and begin to slowly, and with intention scrape the black crayon away. But that's exactly what she did. She pulled that penny across the paper and used it to spell my name – letter by letter. And in doing so, she revealed all the beauty that was beneath. Each letter contained a pattern. A burst of color. Each bit of my name housed pieces of the colors laid down before. Right before my eyes, Jenne bloomed - a beauty that never could have been created any other way.

Today is 3 years and one day since my diagnosis. It is also 2 weeks since my first triathlon and one week from my second. It's not the solution, not by a long shot, but somehow, I think the scraping has begun.

WHY TRI?

I was having dinner at HOLLIE'S house last weekend and eventually the conversation led to my triathlon. Probably because I shouted "I'm doing a triathlon!" when I walked in the door. Of course HOLLIE knows I'm competing in The Thon and her mom knew (because I met her mom the day before and shouted "I'm doing a triathlon!" within moments of meeting her) and a couple of other people knew, but HOLLIE's dad, Mr. HOLLIE, did not know. And so he asked some pretty typical questions. The first being something about the distance. After I gave him the stats, he asked the next logical question: Are you nervous? And I explained very clearly that yes, I was, sort of, I mean, sometimes, but then again I'm excited, but of course, that can be nerves, but it's not like I'm trying to win, but that doesn't mean I'm not nervous, in fact I am, sort of, I mean, not really, but kind of. Then I ate a deviled egg and when I came to (those were some good deviled eggs) I explain that mostly I was looking forward to it – except the run. I wasn't looking forward to the running because, as you know, I don't like to run. I explained this is detail – the fact that I don't run, don't like to run, don't like the concept of running and don't like to run. Yes, again.

Then came a question that I don't get often but was pretty logical given the power with which I explained my dislike of running. Mr. HOLLIE asked, "Well then, why are you doing a triathlon if you hate running so much?"

That Mr. HOLLIE, he's got a way of putting things.

It took me about ½ a second to decide if I was going to tell him (and Mrs. HOLLIE, Nanny HOLLIE and Pa-Paw HOLLIE) the reason I'm doing the tri. Because there is a reason, a real reason. Not just a "for the challenge of it" or a "because it was there" Edmund Hillary type reason but a real, solid reason. A reason that I spent entire agonizing runs trying to uncover. A reason I pondered and examined with every painful, lung-bursting stride. A reason that goes past the competition of it, past the enjoyment of it, past the addicitive nature of competition. All the way back to the days I was laying around growing wild, mutated, uncontrolled cells in my body. Cells that were trying to kill me.

(YOU: Oh goodie, she's going to talk about cancer again.)

There were a lot of things I disliked about my cancer. There were some good things – renewed friendships, getting to see what I looked like bald, not having to shave my pits – just to name a few. But there were a lot of not-so-good things. Too many to name, actually. One of the biggest sucks for me was this whole idea of having to fight the cancer. It is something people tell you right away when they hear you've been diagnosed. "You're in for a fight!" they say. And "Give it hell!" and "You need to really fight this thing!" and I get that, I really do, but I hated it. I hated the whole idea of it. I hated that I had to go to war against my body. That I had to poison it. That I had to do really mean and hideous things to it. Then again it was trying to kill me, so I guess we were sort of even.

Up until that point, I'd always felt like I had a really good relationship with my body. My body and I were really tight – not in the I-look-great-in-hotpants way but in the I-know-when-I'm-ovulating way. Like my body and I were in sync. We were in harmony. Ebony and ivory – er, ivory and ivory. We were in it to win it. The Dynamic Duo. And then, suddenly, we weren't. Suddenly, we went from being all Peaches and Herb to all Ike and Tina. My body went haywire. Turned against me. Took all the good things I'd ever done for it – and pooed all over them. My body basically looked me in the eyes, put its thumbs in its ears and gave me the biggest, wettest, pffffflllllbiest raspberry ever.

And I was left blinking and confused.

It took many, many months for me to figure out if I was at war with a killer. There were many times, well into chemo, when I would be sitting bald and weak and have it dawn on me that Holy Shit – I have CANCER! Those moments were frightening and heart lurching – the exact reverse feeling I've had all my life when I've woken up from a truly horrendous dream and realized I didn't actually kill someone, wasn't pregnant out of wedlock, hadn't accidentally had sex with the neighbor or wasn't responsible for a misfortunate understanding that led to mass genocide. The waking realization of those moments was the same intensity of the realization of my diagnosis. The intensity was the same. The emotion was quite different. Different like cheesecake and a kick in the nuts is different.

Of course, there are only two ways to deal with a realization that intense and that stark.

1) fiercely ignore it or

2) fiercer-ly face it.

The lack of hair and the puking made it a little difficult to ignore. So that left number two. Aptly named. I faced it. I fought it. I told my body to f-off if it really thought I would go that easily. Really, who did my body think it was anyway? Was it new here? Did it not realize who it was messing with? This was ME for crying out loud. Had it forgotten? Apparently. Apparently it needed a little reminder. And so I reminded the rebellious child, the bitter teenager I was harboring, just exactly who I was. Basically I spun around, looked my body right in its cancerous face, narrowed my eyes and whispered two words, "Bring it."

Important side note: there is a song by P.O.D. that I listen to over and over again when I am training for this triathlon. It's called "BOOM". And there is a line in that totally awesome song that is repeated over and over again with increasing intensity.

Is that all you got? I'll take your best shot.

Is that all you got? I'll take your best shot.

Is that all you got? I'll take your best shot.

Is that all you got???? I'll take your best shot … I'LL TAKE YOUR BEST SHOT!

BOOM!

If you watched me train to that song, you'd be convinced I wrote it. It's probably obvious who and what I'm thinking of during that song. And why.

Is that all you got?

You'd think I penned those words myself.

I'll take your best shot

You'd look at me training, you'd listen in on my ipod and you'd raise your eyebrows in recognition of something profound.

Here comes the BOOM.

Eventually, the body backed off and got back in line. Backed off. Capitulated. What choice did it have? Eventually, the body saw the error of its ways. Eventually it shrugged its shoulders and dug its toe in the earth and apologized with its hunchy posture. Oops, it said. My bad. Never mind. Friends?

I'm not one to hold a grudge. Spit/Shake, it was all behind us.

But to be quite honest, we've never really gotten back to where we were before all of this happened. Ever since then, I think my body and I have only been tolerating each other. We've been like two lovers after a fight–without the make-up sex. We've been tiptoeing around. Nodding politely when the other has something to say or contribute. We've endured each other's presence. By and by we've abided. And that's the all of it. Which is fine.

Fine, but not okay.

I miss me. The whole me. The united me. The oneness I shared with myself at one time. And I want me back.

So I don't know. Maybe I've seen too many of those movies where two opposing forces come together against a common enemy or a common goal. Maybe I've read too many Jane Austin novels where the one you hated ends up being the one you marry. Maybe I've watched too many after school specials and tween movies where foes become friends, but somehow, someway I just believe that if my body and I can do this thing … this crazy, senseless, what-are-you, nuts? thing called a triathlon .. and if we can do it together – because believe me, it's going to take at LEAST both of us to finish this thing – then in some way I will have shown myself that we're back. That we can hurt and push and strain and we can do it together and we can do it side-by-side and we can hate the difficulty without hating each other. That together we can girl-up and do this.

And when we cross that finish line, my body and me, it will be because together we figured out how to run without throwing up in the ditch and together we rode our bike in high freakin' winds and together we figured out how to overcome leg cramps and side-stitches and together we swam lap after lap after lap in a warm rehab pool and together we sweated and stunk and ground out one more mile, one more lap, one more time around the track. Together. And that's why I'm doing the triathlon. Because by God, I have to.

There's really no finish line when you beat cancer. No end of the road – the road, in fact, keeps going. That is, after all, the point. But there is a finish line in a triathlon. A very distinct, a very clear and well-marked finish line. And I guess I need a finish line.

And a start line too.

Here comes the BOOM.

IN ANSWER TO YOUR KEYWORD SEARCH, “INSECURE ABOUT A PORT SCAR”

So. I've mentioned before that I occasionally check my stat counter to see what keywords are bringing people to this blog. This little exercise can be great fun (when I see a key word such as "gazongas") and troubling (when I see something like the title of this post). Sometimes, as with this combo of keywords, it's obvious why the person landed on my site. I probably used that exact phrase once or twice in my writings. So it makes sense. But I wonder if the person left feeling comforted or confused. Maybe a little of both.

My first thought when I saw that search was: well, crap … because I know that feeling and dang it all, it stinks. But then I have to be honest and say - maybe I'm projecting. The more I think about this, it could be taken more than one way. Is this person "insecure" as in feeling self-conscious and unattractive because of the scar left behind? Or is this person insecure as in worried about the scar because it has changed or maybe looks infected? Could be either. Has this person undergone chemo and had the port removed and is now staring at an ugly scar in the mirror or are they looking ahead wondering whether or not to even get a port because it might leave behind an ugly scar? Or maybe it is none of those. Maybe it is a spouse or friend of a patient trying to comfort them. Maybe it is an in-touch, extremely empathic doctor trying to learn more about why his or her patients hate the scar the port leaves behind or maybe, just maybe, it is a captain of a freighter who, while docking, crashed into the shore line and is concerned about the damage.

We may never know.

But we can guess. And my guess is there is someone out there looking in the mirror after putting on a new top with a v-neckline wanting and hoping to feel downright pretty and instead is gazing at a healed wound with an unhealed heart.

As those of you who were with me during the chemo months know, a port is a nifty little device that is placed underneath the skin so a patient can receive chemo without having to start an IV each time. There are many things to like about having a port. And honestly, when I first got mine, I loved that thing. It made me feel all bionic. I thought it more than nifty, I thought it downright neato. I liked the idea of it. I liked knowing I wouldn't have to endure having an IV started all the time. I liked the uniqueness of it and I even sort of liked the feel of it beneath my skin.

However, I grew to hate it. There were lots of reasons for that. Some I posted. Some I didn't. Let's just say the honeymoon period for Jenne + Port didn't last very long and I yearned for the day that little device would be removed from my chest.

The procedure to put the port in isn't too terribly long or difficult - the surgeon simply opens up a small "pocket" in your chest underneath the skin and slips the port in. After that he or she places the line from the port (the tube that will carry the chemo) into a vein and makes sure the line goes directly into the heart. Then he or she stitches the incision closed and blingo-blango, you're all done. The procedure to remove it is even less of a hassle. In fact, it is much like pulling open a Fed Ex box ... just sort of get a hold and yaaannnnnnnk. Under local anesthetic, the surgeon opens up the skin, grabs the port, and puuuuuuuuuuuulls (and yes, I could feel it). Out comes the port, out comes the line, in go a couple of stitches. That's it. The only problem with both procedures is the surgeon has to cut into the patient to do both. That's two incisions pretty much in the same place. And a scar on top of scar tissue can be downright - well, ugly. It doesn't heal very well. Which makes sense - a hurt on top of another hurt somehow equals more than two hurts. Wounds like that just don't heal up without some sort of significant mark left behind. As anyone who has gotten their heart broken by the same person more than once can tell you.

So there is a scar. And it is ... well ... nasty. Red. Puffy. Fat. That's how I'd describe my scar for the first year after my port was removed. And anything ... a n y t h i n g described as "Red. Puffy. Fat." is going to make a person feel insecure. Unless you've got the hots for the Kool-Aid guy. Today my scar isn't so much puffy and fat ... but it is still red. And it is noticeable. The scar from my biopsy has all but disappeared but the port scar shines on ... some 2 ½ years later. And I see it. Every day. I notice it. I sigh when I put on something that reveals it. I make the defeated pffffft sound with my lips whenever I catch its reflection in the mirror. I tug neck lines of new outfits up and down, left and right, and up again while in dressing rooms trying to figure out if that scar will be exposed.

I guess all I'm saying is, I get it. I really do.

And I know what you're probably thinking - those of you who aren't insecure about your port scar and those of you who don't think the port scar is a big deal. I know what you are thinking. You are thinking "Hey! It's not that bad!" and you're thinking "But gosh, wasn't it worth it?" and you're thinking "I'm sure no one but you really notices it" and you're thinking "Look here, in the grand scheme of things, does it really matter?" I know you are thinking all those things because I have thought those things myself. But this post really isn't about you. So maybe just hush it for a bit, okay?

Once, a while ago, an oncology nurse patted me tenderly on my port scar and told me it was my badge of honor. And then she called me "angel". It touched me. Deeply. And after that, I didn't mind my port scar so much. But that seems a long time ago now and every time I dress I see that scar. Every time I wash, I feel it. Every time I put on make-up, I contemplate covering up the scar with concealer. Not necessarily because it is ugly ... but because it labels me.

Port scar = Cancer patient.

Remember that scene in Jaws where Hooper and Quint are comparing scars? Remember how they share how and when they were wounded? They are laughing and sharing and loving the memories. And then Quint is asked about a scar on his forearm and he responds, "Oh that? That was a tattoo. I had that removed." And Quint goes on to tell the story of the U.S.S. Indianapolis and what happened to him. Do you remember how the jovial atmosphere of the room changes in an instant? Remember how he looked as he recalled those moments? Remember how he spoke of that time? How he didn't just share, but relived those moments when he looked at that scar? How when he spoke of it, he folded inside himself a little bit and stopped singing and stopped smiling as if that scar reminded him of an experience so painful, so difficult, so life-changing, so significant that no matter how far he was from it, it was still etching scars into his soul?

Remember? It is one of the most beautifully raw scenes I've ever watched.

I started this post hoping to answer a question. Hoping to provide comfort. Hoping to convince and cajole and to give confidence. And I just realized I can't do that. I can't do any of it. All I can do is say to you - you who typed "insecure about a port scar" into a search engine and fumbled onto this blog - I get it.

And maybe, when you get a chance, watch that scene from Jaws and think not how YOU feel about YOUR scar, but how you feel about Quint when he shares his.

ME AND YOU AND A DOG NAME BLUE AND PRETTY MUCH EVERY ONE ELSE TOO

Last Thursday I went for a run. I had to. It was such a beautiful day here - 80 degrees and sunny with a breeze. I mean, that's great weather at ANY time but right smack at the end of winter and just a mere 4 days after a big SNOWSTORM and man, that made for a good day.

There is a trail near our house - The Trolley Trail - and I love running on it. It cuts through a nice green grassy swath of land and winds pleasantly past cottage homes and quiet streets. Even though I love the trail, as I left the house I was somewhat reluctant to use it because I assumed there would be quite a few more people on it than usual. But since the trail is so perfect and it was the perfect day, I headed down there anyway and began my run.

And immediately began laughing. EVERYONE was on that trail. Every. One. Anyone who has ever gone for a run, thought about going for a run or knows how to spell the word run was out. And not just runners ... there were walkers power walking and couples casually strolling and moms pushing double strollers and dads carrying kids on their shoulders and kids walking dogs. There were people on mountain bikes and families on cruisers and little kids peddling big wheels. With every person I passed and every one that passed me I got more and more tickled. I could hardly wait to see who was coming up next and half expected to see a guy in a bowler hat sitting way up high on one of those bikes from the 1900s with the giant front wheel and tiny back wheel or a couple of kids pushing a hoop with a stick. It was just the most delightful day. And there I was running and giggling in the midst of it.

When I went through chemo life was difficult - not impossible, but difficult. I would go into treatments feeling pretty good and in a matter of a few hours feel as though I couldn't move without help - and often, I couldn't. When I would leave chemo, I would lean on The Hub and shuffle along slowly, sometimes groaning. There is a bench just outside the automatic sliding glass doors at the Cancer Center and The Hub would lower me gently down to the bench while he'd race off to get the car and bring it around so I wouldn't have to make the trek to the parking garage ... the same trek I bounded through on the way in just a few hours before. Sometimes we would leave chemo and go get a bite to eat ... we could pretty much guarantee that it would be the last meal I would eat for days so we'd make it high calorie goodness like corn chowder and gooey ham and cheese sandwiches and bowls of ice cream with fudge sauce and a brownie on the side. As the months went on and the cumulative effects of chemo caught up with me, those lunches became obsolete but in the beginning they were a bright spot in what was a downright bleak time. By the time we'd get home the steroids that I got with each treatment would kick in and I would want to start a puzzle. Early in treatment we discovered I couldn't concentrate well enough to work a crossword and although an avid reader in non-chemo life, I couldn't seem to make my eyes follow a trail of words on a page, so jigsaw puzzles became popular around here. We went to Target at some point and pretty much bought every puzzle they had ... boat scenes, flowers on a hillside, mountain peaks, the statue of liberty and even a puzzle of Da Vinci's Last Supper (which was fun to put together because my mom kept calling the disciples' robes their "costumes" ... as in "Is this part of Jesus' costume or is this someone else's costume?" Which made me laugh every time. The Hub finally and gently said, "Um, I don't think those are costumes as much as just what they wore." Poor Momme, she was so tired back then). As the steroids wound me up, we'd dump a new puzzle and begin working. Sam and Julie would come by in the evening and join in. The Hub would at regular intervals get up and get me a glass of water. I'd ignore it for a while until he'd threaten to tell my mom and/or my doctor I wasn't hydrating then I'd choke it down. Water tasted just like the chemo they pumped into me and it was all I could do to drink the required 6 - 8 glasses a day. As the night wore on, people would leave or go to bed. I'd sit hunched over for hours hunting for the next piece and the next. Slowly creating something beautiful. Sometimes I'd stay up until 1 or 2 in the morning working a puzzle until either it was done or I was. Eventually, I'd drag myself to bed, curl up and sleep.

By the next morning, every bit of that late night steroid-induced energy was gone. I'd wake up feeling hung over - only without the great memories of a fun night out. The side-effects would have kicked in and every bone in my body would ache. My skin felt thin and paper-fragile. My elbows felt like steel points threatening to rip open my hide and my muscles burned a low, steady pain. Suddenly any strong smell was too much. I'd get sick when my mother brewed coffee or cooked meals. Loud noises sent me to bed. Music actually hurt me. It was painful to listen to anything. My eyes would blur if I looked at the TV too long and even the stream of the shower would be too harsh. I would be so weary and tired but unable to sleep. Nothing helped ... not really. We'd try every remedy, every tip and trick but those days following chemo were endlessly painful. Other symptoms came and went. Sometimes I was sick - padding to the bathroom, or leaning out the car door to vomit. Sometimes my mouth erupted into painful sores. Sometimes I'd have bouts of fatigue so severe I couldn't finish a sentence. My breathing became labored halfway through chemo and the burn with every breath would make it difficult to get the little bits of air I needed. Occasionally pain would rocket through the bones of my arms or legs and I would buckle and cry out. My mouth tasted coppery and awful and my skin smelled burnt and dead. Every so often, my mind would go blank and I had trouble thinking simple thoughts. The bleomycin compromised my lungs and I suddenly was unable to yawn without pain severe enough to bring tears to my eyes and I would grab my chest and sob and gasp for air at the completion of each sneeze.

Like I said, life was difficult.

However, it wasn't continuous. Those awful symptoms that plagued me each treatment would only last for a few days - longer as treatment went on - but for the first ½ dozen or so treatments, those post-treatment symptoms would only last a week or so. And since my treatments were 2 weeks apart and since I didn't have to start taking nupogen shots to boost my white blood cell count (side effect: horrible bone pain) until a couple days prior to treatment, that meant I had at least 3 and maybe as many as 5 really good days before I had to submit to the poisoning again.

At least 3 really good days.

The oddest part of it was as quickly as the symptoms would come after treatment, they would seem to go a week or so later. Sometimes I would go to bed feeling the heat and pain and heaviness of those awful side effects and wake up feeling light and calm ... as if the symptoms stole away in the dark of night. They all got together hitched a ride out of town. Stow-aways. They snuck in then slipped away. I'd wake up and wow ... I'd feel like myself again. At least for the time being.

One of these renewal days, a few treatments in, I felt good enough to make lunch plans. I can remember driving downtown to pick The Hub up for lunch. I can remember having a normal conversation at lunch. I can remember seeing a few people on the way back and actually enjoying talking with them. After I dropped The Hub off at the office I started home. The day was nice and I rolled down the windows on the car so I could feel the warm air. As I drove the song "Unwritten" by Natasha Bedingfield came on the radio and I freakin' blasted it. The song sounded great. The sun looked great. My lunch tasted great. And I felt ... GREAT. I felt SO GOOD. Nothing hurt. I could think. My body wasn't rebelling against me. I might go for a walk later. I wanted to talk to people. My bones didn't hurt. I'd eaten spaghetti and meatballs for lunch. I didn't need a nap. And I LOVED THAT SONG. And it was at that moment, as I was flying down the highway feeling the wind whip over my bald head that I began weeping. Big, fat, wet tears slid down my cheeks and I did nothing to stop them. I wasn't crying because I was broken or because I hurt ... I was crying because it was all so good. Life was so very good. And I felt ...good.

That was the most dramatic example of renewal, but it happened every time. Every treatment I would have a moment - after the side effects subsided and I started to feel normal again where I would just marvel at how good it felt to feel good. More than once I would turn to The Hub or my mom or a friend and say "I can't believe you people feel like this all the time!" It was a wonder, a miracle that anyone - let alone most of us - could feel this good and this was NORMAL.

And then ... just a few days later ... the normal was gone. And I was back in the quagmire.

26 months ago, I had my last treatment and felt those horrible side effects for the last time. That means 7 - 10 days after that treatment I felt good again. But for the life of me, I can't remember that feeling of feeling good. The amazement I felt that day in the car and all the other times is only a memory for me. Just like I can't remember the bone pain, only that I had bone pain; I can't remember the feeling good. I only know this feeling that I now feel every day once made me cry with happiness.

I went for a run last week when the weather was perfect. When I went, there were so many others out with me - enjoying it, loving it, drinking it in. And it was no wonder. Weather like that is not to be taken for granted. That was Thursday.

Saturday it was just as beautiful. The sun was shining, the breeze was light and lovely, the temperature was perfect. Trees were budding and my tulips had poked through the ground. It felt like spring was here to stay. It seemed the snow and ice was a memory. At 3:30 in the afternoon, on this perfect spring day, I drove by the Trolley Trail.

It was empty.

And maybe that emptiness should have made me sad. Made me angry that people weren't taking advantage of the beautiful day. Made me upset that people were just taking the nice day for granted when just a few days before it was so special they just had to be out in it. Maybe it should have bothered me. But it didn't. Because part of life is taking it for granted. There is beauty in that. Beauty in the hope and confidence that I can let a gorgeous day slide by without notice because there will be others just as gorgeous that follow.

And as much as I wish I could remember the feeling of feeling good enough to cry ... I'm grateful that I don't. Grateful that I take it for granted.

There is more than beauty in that. There is mercy.

TWO-THIRTY? NO, BUT MY HINEY SURE IS SORE (AND OTHER LESSONS OF THE DUDE RANCH)

Know what I hate? I hate working out and then going outside when it is cold. I hate that feeling of being hot and sweating and then instantly freezing. Yeeee … I shivered just thinking about it. Miserable. And lately it's been really cold here. Like hurt deep down in your tushie cold. And the normal discomfort of the cold after a workout has been replaced with downright pain. Especially since I rarely remember to bring warm, dry clothes to change into after a workout. Thankfully, I have The Hub who looks out for me and makes sure I have at least a hat to wear when we leave the gym. Last night, after our workout, he offered me the choice between the orange fleece hat or the black knit cap. I chose the black knit cap and pulled it tightly down over my sweaty ponytail and soon to be icicle ear lobes.

 

Fast forward a little bit later and I'm sitting at my desk in the office typing up an email. I had removed my coat and scarf and my wet clothes and put on my pjs. I still, however, had on my hat because it was chilly in the house and a hat does a lot of good in that area. So there I am typing away when The Hub asks me a question from the hallway. As I answered he moved into the office. I was still looking down as I answered but tracking him with my peripheral vision. I could see he was just standing there. Looking at me. I finished answering him and looked up. We locked eyes for a brief second before he turned away. It was then I caught my reflection in the big mirror across from my desk. Pjs. No makeup. All of my hair tucked up inside a cap pulled way down on my head.

 

"Hey!" I cried, "I look like Chemo Jenne!"

 

 

A few months ago my friend, HOLLIE! broke her ass. Well, she didn't break it, it was broken for her. By a horse. A really big and feisty horse. And a very hard saddle.

 

There's not much HOLLIE won't try or do. She's a bit feisty herself. Feisty may be the wrong word … fierce. That's a better word. HOLLIE is fierce. She's determined. She's a planner AND a doer. When she was going on vacation with her boyfriend (hi Rob!) last year to Italy I asked her about month before if she was going to try to see Michelangelo's David. "It's on the itinerary!" she said and I guess I assumed either a) she meant it was on a mental list of things they wanted to do or b) they were joining some sort of tour group for the day and it was on their itinerary. But no. What HOLLIE meant was it was on HER itinerary. The one she had created. The spreadsheet of places to go and things to see all tied to a timeslot and directions and special notes. I just had to laugh because I went to Italy the year before and not only was my "itinerary" mental, it only contained two items 1) drink wine and 2) eat pasta while drinking wine. But that's so HOLLIE. What's even better is she sent it to me and I have to say it was wonderful to be able to know at any given minute (and yes, I do mean minute) where they were and what they were doing. HOLLIE doesn't miss a trick. So it shouldn't surprise anyone that when given an opportunity to ride a big, feisty horse HOLLIE would respond with "Giddyup!"

 

(Now, at this point, HOLLIE would chime in here and tell you all the reasons why she shouldn't have been on that particular horse and why that horse was saddled too early and what sequence of events led up to the disastrous decision for her to be on that horse and why in the hell didn't the owners of the ranch have some sort of spreadsheet to keep track of all of this? But the bottom-line, pardon the pun, is …)

 

…. Her butt was broken. Not in Italy, in Colorado. They were at a dude ranch (seriously, who goes to Italy AND a dude ranch in the same year?). She was on a horse, the horse took off, she bounced up and down… hard… and her tailbone broke. It was fractured … not just bruised or beaten but fractured. And it hurt. So bad that she had to sit on a donut for like 6 weeks. My total planner and put together friend had to carry around and sit on a therapeutic donut seat so her boom boom could heal.

 

(pause here so I can laugh again … Not at! I swear I'm not laughing AT! … It really was terrible. It's just … okay I know, I shouldn't laugh. And I'm not. I won't. <deep breath> okay, I'm composed again)

 

So the tailbone broke and because of it she couldn't work out for a long time, she couldn't complete the bike ride across Iowa she'd been planning (seriously, who goes to Italy and a dude ranch AND rides across Iowa on a bike all in the same year?), and could barely sit without pain for WEEKS … months even. It was awful. And I'm sure I don't know the half of it. I'm sure it was much more painful and terrible than she let on. But she's much better now and back to doing all the things she did before and the donut is long put away.

 

Then this past week HOLLIE wrote me to tell me she had to have a cracked molar replaced. This is terrible news for HOLLIE because she loves her teeth and also because it's a hell of a process to fix it. Apparently the problem of the cracked molar was exacerbated by an infection. An infection that was started when the tooth cracked and has been increasing in intensity for a while now. In fact, the infection was so bad it had begun to eat away her jaw bone. All of this without her knowing. This was just going on under the surface while she continued her life. Now she'll have to go through heck to get it fixed including pulling out the old molar, putting bone powder in the tooth-hole, letting the bone regenerate, placing a post and eventually putting in an implant. It's a terribly long and expensive process – it will take 5 months and thousands of dollars to complete and the scariest part is that had she not taken care of it, it could have killed her. Yeah, you heard right, the infection could have caused a heart attack. Now, guess when she cracked that tooth … Yup. On the horse. That same ride that busted her fanny also busted her tooth. Peeps, that was one bumpy ride. Sure, she knew the tailbone was busted but she never dreamed months later she'd still be dealing with that big, bad, bumpy ride. That impact caused not only immediate damage but long-term hidden damage. And the hidden damage was much more expensive and insidious.

 

Last night, after I spurted out the words "I look like Chemo Jenne!" The Hub turned back to face me. His eyes were wet and full. He had seen. Clearly, he had recognized it…had recognized her. He looked away again and said "I know." And then shook his head slowly, took a breath and walked out of the room.

 

That chemo … that was one bumpy ride. And I never dreamed all these months later we'd still be dealing with that big, bad, bumpy ride.

Hidden damage.

THOUGHTS FOR THE DAY

"I don't want to be like my dad."

 

We were sitting at lunch and I was staring out the window. The Hub was listening to a conversation in the booth behind us. "Eavesdropping" would be the wrong word to use in this situation since the family in question obviously didn't care who heard them. It was like sitting behind a booth of roosters at dawn. Not chickens - roosters. And at dawn when, as you know, is the friggin' loudest time to be a rooster. COCKADOOLE-BRING ME MY FOOD-ADOOO! They holler. COCKADOODLE-IS THAT YER NEW PICKUP? Scratch Scratch COCKADOODLE-OFFENSIVE REMARK ABOUT A MINORITY CLASS HERE-A DO DO DOOOOO! With all that going on, I wasn't doing much other than thinking. Just thinking. The clash of the booth behind kept me from dwelling on any one thought in particular for too long, kept me from concentrating at all really. So I was just sort of letting my brain bump around in the dark without my thoughts to guide it. Instead of trying to direct intention toward a certain end, I was just calmly drifting on my thoughts. Without purpose. Nothing in mind. When without much effort at all, my brain coughed up this solitary and stunning thought. "I don't want to be like my dad." And this one thought unlocked a puzzle I'd been muddling over for days.

 

This, by the way, happens sometimes in my head - this meandering thinking without purpose - and leads itself to a solution I've been trying to get after without success. It's like if I get out of the way, whatever's been bothering me decides to show itself. A child who has been chased and chased without success who finally comes popping out when you've announced you're going to sit quietly and do nothing - least of all look for that silly little kid you've been after.

 

I have this pattern with many things:

Thoughts.

Answers to crossword puzzles.

Children.

Pickles.

 

Occasionally Pickles (the dog, not the prepared cucumber) finds her way outside the house without a leash. Once she's escaped, the only surefire way to get Pickles back in the house is to act like you don't WANT her in the house. Even if she's at a dead run AWAY from the house, you can guarantee her return if you can just get her attention and then act like you DON'T WANT HER ANYWHERE NEAR THE HOUSE. To get Pickles back, you have to run FROM her. Not TO or AFTER her ... no no, that doesn't work at all ... FROM her. You have to act like you WANT her outside barreling through the neighbors' back yards at a million miles an hour with her nose to the ground. You WANT her dodging traffic and spinning around like a damn idiot in the middle of the street chasing her tail. You WANT her to fly with her ears flapping and her legs a blur up and down the sidewalks miraculously missing the old man down the street with his walker by mere millimeters ... you WANT her doing all of that. And what you DON'T want, no way, no how, is for her to come BACK inside. In fact ... you are going to RUN as hard and as fast as you can and RACE lickety split up the sidewalk and BURST through the door hoping to slam it in her fuzzy yellow face! Never ever to let her in again! And if you act like that's what you really want ...what your heart desires MOST ... then and only then will she break the laws of physics to ensure that she beats you back to the house. Where you can calmly follow her inside, lock the door and beat the tar out of her while she tries to lick you to death.

 

Petulant children.

Stubborn dogs.

Troubling thoughts ... they are all the same. Ignore them and they'll come a runnin'.

 

So as I sat there watching New Year's Day traffic out a window framed with yellow ruffled curtains in this somewhat down-homey (albeit terribly loud) restaurant I suddenly had the urge to speak the thought that's put a fuzzy gray hue around my life for the past few days.

 

"I don't want to be like my dad."

 

Since The Hub knows better than anyone how much I adore my father and how much I admire him and have told story after story about him and have intentionally done things to raise The Kid in ways similar to how I was raised, I'm quite surprised he didn't schew up his face and say "Do WHUT?!" Instead he assumed, rightly so, there was more to this statement than met the ears and simply stopped listening to the roosters in the booth behind us and started listening to me. Seamless and smooth ... he transitions so well.

 

I know so little about my dad's illness. His cancer. I know I was a year old when he was diagnosed. I know he first found a lump under his arm and the cancer was in his chest and neck. I know he went through chemo and radiation and the diagnosis of Non-Hodgkin's lymphoma should have been a death sentence for him long before it was. I know the fact he lived 14 years after his diagnosis was a miracle and I know he was dying long before I recognized it. When I was going through my own cancer treatment 2 years ago I remember asking my mother to review my dad's timeline with me again. When was he diagnosed? What was that treatment? When was he re-diagnosed? What was that treatment? When did it come back again? How did you know? When did you know treatment wasn't working? When did you decide to stop treatment and why the hell didn't I realize any of this? I guess so much of what I know I gathered as a child. And those memories are spotty at best. What I know is just little pieces I've nailed together here and there with thumbtacks and reinforced with scotch tape. Children have a way of taking little bits of information and observation and creating their own reality. Once my father told some joke about grandfather being an old Indian fighter ... and grandmother being an old Indian. From that I created a whole history of my family tree that led to me asking him one day years later if we were Cherokee or Chickasaw. Neither, he said, we're Irish. Which I've come to realize isn't true either. So I guess it's understandable that I'm confused about many things that have to do with my dad. Many things that have to do with his cancer are so foggy and unclear. Seen through the eyes of a child. A child who grew up listening to her daddy get sick and wretch in the toilet. A child who thought all daddys had scars like that on their chests - deep, wide and long - smooth, shiny tissue long healed from deep burns. A child who thought everyone went to the hospital all the time and didn't understand when people gasped when she blurted out "My daddy has cancer!" A child who, despite all she'd seen and heard and experienced, fully expected her dad to walk her down the aisle, to be in the stands at her graduation, to help her buy her first house and to bounce grandchildren on his knee.

 

 

I don't

Want to be

Like my dad.

 

I don't want to be chased by this damn disease the whole rest of my damn life and have to fight it again and again and again. I don't want to muscle my way around my life bullying a disease into thinking I have the upper hand. I don't want to strategically plan and pursue a life that evades and avoids the killer that is stalking me. I don't want to live whatever years are designed for me to live with the hot breath of a lunatic assassin warm on my neck. I don't want to live for 14 years and then try to figure out a way to die with dignity. I don't want my mother to attend my funeral. I don't want my child to be called to sit up with me late into the night when my breathing is shallow and labored. I don't want my legs to fill with fluid and my skin to turn ashy and green and I don't want to sit in that godforsaken chemo chair ever ever ever again.

 

And I don't want to write about it anymore today.

 

 

 

TO FRIENDS AND FAMILY OF THE RECENTLY DIAGNOSED

The phone rings. You open an email. You sit at lunch with a friend. Wherever it happens, someone tells you they have cancer.

Cancer. What a suck-fest.

You, of course, are stunned. You, probably, are scared. You, understandably, have exactly NO idea what to do. So, for some reason, you email me. And I get that. I've never been short an opinion, that's for sure. But I have to say, I've been surprised to get the question so much. I've had cancer, sure, but I am not, in any way, an expert on this subject. So the question, "What do I do for So and So who has been diagnosed with Such and Such cancer?" throws me. My short answer is – I don't know what you can do for So and So. But I know that answer is as helpful and welcome as a fork in an all-soup restaurant – on broth day. And I also know doing nothing really shouldn't be an option. So in the hopes of giving you something to do and in the vein of "if you throw enough stuff against the wall, something's gotta stick" (which is the same logic I use for a lot of my humor) here is a list of practical things to do for your recently diagnosed So and So.

Oh and if you're So and So and you've recently been diagnosed, I'll post a separate list of things you can do for you. (as if you don't have enough to do already).

So here it is, JENNE'S INCOMPLETE LIST OF PRACTICAL THINGS YOU CAN DO WHEN A LOVED ONE HAS BEEN DIAGNOSED WITH CANCER

1) Dump all your expectations about how the So and So should or will act.

Cancer's a weird one. It brings out the best and worst in people and different people will have wildly different reactions to it. It's sort of like onions. But not as tasty. Don't assume the newly diagnosed patient is terrified for their life. But don't assume they aren't. When the diagnosis comes it brings with it a flurry of activity – the to do list grows by the moment and fills quickly with appointments, tests and surgeries. What this means for the patient is he or she has very little time to think and he or she probably has a feeling of "doing something about it". This can make the patient feel empowered – they are taking this thing head-on – or it may make them feel overwhelmed. You have no way of knowing … heck, they won't even know how they feel. Just be ready to be hit with any and every emotion. And don't judge. And don't force. And don't assume. I said that already. Just don't.

2) Buy a blanket.

Chemo is cool. Meaning it is freakin' freezing in the chemo room. In addition to the chemo room being cold enough to hang beef remember the patient is being pumped full of cold fluids. Bag after bag of drugs and saline are pushed and dripped through an IV line or a port into the patient's body. These fluids aren't warm. In fact, it can feel like someone is shoving a popsicle into your chest. The result is you spend hours being a Chilly Wilikers. So a blanket comes in handy. A erupting volcano or a star going nova would come in handy too but that's less practical. Most chemo rooms will have a closet full of blankets the patient can use – but come on … you know how that goes. Those blankets are death white, have been laundered about a ga-zillion times, are scratchy and often holey and just plain miserable. So I think one of the best things you can do for someone going to their first chemo appointment is buy them the softest blanket you can get your hands on. Target usually has some good ones that meet all my criteria: Soft. Inexpensive. Not too big. Soft because who wants a concrete blanket. Inexpensive because you'll want to include a note with the blanket telling the person that they should feel free to throw the blanket away when they are done with chemo – after all, you only spent a few dollars on it. (Now between me and you, you can spend whatever you want, I just want to make sure the other person doesn't feel like they have to hold on to it forever. Because truthfully, that blanket will always bring up chemo-memories and no one really needs or wants chemo anything once chemo is done.) And not too big because a big blanket gets unwieldy and can turn into a hassle. And take it from me, there's enough hassle what with the cancer and all.

3) Get friendly with snail mail

Emails are great. Phone calls are nice too. But there is nothing – NOTHING – like getting a card with a hand-written note in it in the mail. My suggestion is to go buy a few cards and address and stamp them all. Keep them around and every so often pick one up and write a note inside and stick it in the mail. Don't underestimate the power of this. I have a container that is shoved full of cards and letters I got. Sometimes in the middle of the night I would shuffle into the other room and sit in dim light and read through these cards. It's always the middle of the night when things are the hardest and things feel the bleakest and the night looks the darkest. Reading those cards gave me more than comfort. They gave me a reason to pad softly back to bed and try to rest. Side note here … I don't think I ever responded to any of these cards. So to all of you who sent them – thank you. You saved my life.

4) Don't expect a thank you for the cards you send

I just added this one after I wrote that last line.

5) Nix the perfume

When going to visit your patient please be careful of strong smells. Chemo stinks, literally and figuratively, and it makes other stinks stink more. I became extra sensitive to smells when I was going through treatment. Anything with a strong odor had to be eliminated from my world – this included bacon, coffee and perfume. (If you wear bacon-coffee perfume you may just want to rethink visiting your patient at all.) If you live with your patient, get used to buying unscented everything. If you are stopping by for a visit, please don't wear perfume or strong-smelling deodorant (unless you yourself are strong-smelling then I guess the deodorant is the lesser of two evils). If you are a best friend who plans on seeing your patient regularly, I suggest you stop wearing perfume or using strong laundry soap and fabric softener for the few months your patient is going through treatment. It will be worth it when So and So doesn't cover their mouth and run for the bathroom when you hug them.

6) Create a binder with envelop pockets

You'd be amazed by the amount of paperwork that cancer brings with it. You'd also be amazed by how little of it you want to read when it is handed to you. This doesn't mean, however, you don't want it. When I was going through chemo, my sister made a binder for me. That binder included all kinds of sections – one for symptoms, one for information, one for test results and others. The binder was awesome. Even better, it had envelop-type pockets in it so I didn't have to three-hole punch anything. It was great to be able to shove all the paper work I got into that binder. It was awesome to have it. It helped me feel in control of things in the beginning when things felt very out of control. I will say this, however, I didn't use all the sections in that binder. I remember there was a section for keeping track of the questions you may have and the answers you get. I never used that. I also just remembered that after about the 4th treatment I stopped taking my binder with me. I'm not sure why. I loved that binder.

7) Don't expect your patient to use the binder

I just added this one after writing that last line.

8) Don't ask, Just do

Feel like making dinner for your patient? Do it. See a soft pair of slippers and a robe you think they'd like? Buy them. Think they might like to have their weeds wacked or their yard raked? Wack and rake away. I guess my point here is, don't ask for permission. Because if you ask, your patient is going to say they don't need dinner, have enough slippers and like the leaves right where they are. And all of that might be true but also true is the fact that you need something to do so you can feel like you are helping and even though cancer patients are a usually proud lot, we still think it is pretty cool when you show us you love us in little practical ways. And if you just can't bear the thought of doing something without permission then maybe just give the patient a choice … sort of like "I'm making dinner for you, do you want chicken and chives or rice and beans?" or "We're on our way over to rake your leaves, do you want us to bring ice cream as well or not?" and "I have something for you! do you want me to bring it by before or after your appointment tomorrow?" See how that works? Oh, one thing you should ask permission for is a visit. Just make it sound palatable like "We'd like to see you and we're on our way to the movies, can we stop by?" that way it doesn't feel like you are making a ton of effort and the patient will be more likely to tell you No if they need to tell you No.

9) Drop by, but leave already

Nothing wrong with a drop by visit. But there's nothing wrong with leaving either. If you have to use the bathroom while you're there you've stayed too long. Enough said.

10) Listen

Sam and Julie used to stop by after every chemo treatment. They'd come over. They'd sit. We'd do a jigsaw puzzle. I was always hopped up on the steroids I got during a treatment and for the first 12 hours after a chemo appointment, I'd be one big ball of mouth. I'd talk and talk and talk … about chemo, about cancer, about carrots and underwear and house payments and hockey pucks. I'd talk and talk and talk. And while I talked they'd listen. Sometimes we'd all laugh. Sometimes we'd all cry. Sometimes they'd ask questions. Mostly they just listened. I can't describe how healing it was for me to talk and have someone listen – judge free, advice free, expectation free. I think you should do that for your cancer patient. I think you should listen. You remember how to do that, right? Pretend it isn't a discussion – pretend the patient doesn't want your advice. Pretend you are watching a movie, or a monologue. Pretend whatever – just do what it takes to listen … really listen … to the patient. And don't even think you have the answers. You don't. So just listen. It is one of the best gifts you can give someone.

11) Don't forget the support person

So here's the deal … when you are going through treatment, you get lots and lots and lots of attention. People make you dinners and send you flowers and run up to you in the mall and ask you how you are doing. Your email box gets jammed full of well-wishes. Your fridge can overflow with casseroles. Your drawers get stuffed with soft slippers and cozy PJs. People want to know how you are doing, how you are feeling, what you are thinking. And all this time, they are going to look right past that main support person – never asking how THEY are. Never wondering how THEY feel or what THEY need. And let me let you in on a secret here – the support person takes the brunt of it. In my case, The Hub was the target of my discontent so many times. The Hub held my hand in the chemo room and my head when I was feverish and achey. The Hub cleaned up the vomit from the car and kept the house smell-free. The Hub ran around town trying to find me something I claimed I wanted to eat only to be told it "tasted uggie" when he got back. The Hub held my limp body up in the tiny oncology floor shower at St. Luke's and carefully washed me clean when I felt "covered in hospital". The Hub carried me to the bathroom when I was too weak to walk the 10 steps. The Hub slept without covers in a freezing cold room when I was experiencing hot flashes from my chemo-induced menopause. The Hub drove me to appointments and meetings and business engagements because I wanted to keep working but was too tired to drive the car. The Hub moved the bed around 4 times just so it wouldn't feel like I was in the same room for months on end. The Hub took notes, made dinners, answered questions, shaved his head, wore a livestrong bracelet, remembered my hats, listened to my bitching and put up with my shattered confidence. He did all of those things. He did more. And he did it all while having to deal with his own fear, longing, worry, confusion, frustration and exhaustion. And he did it brilliantly. Without complaint. Without pause. And I find it ironic – so ironic that people would forget all about him when asking how I was doing. Because I can say with all my heart – it wasn't chemo that saved me … it was Steve. So I don't know how you are going to "not forget the support person" – maybe you'll send them an email. Maybe you'll shoot them a card in the mail. Maybe you'll take them out for lunch or maybe you'll just look them in the eyes and say "how are YOU?" I don't know. But do it. please. Just do it.

12) If all else fails (and even if it doesn't) just be honest

"I don't know what to say" goes a long way. "I don't know what to do for you." is even better. "I'm scared" may unlock something in the patient they need to express or it may give them a chance to help you. If you don't know, ask. "What's the prognosis?" is just fine to ask. Don't understand treatment? Ask the patient to explain it. Sense that explaining it is upsetting them? Ask if it is. Be gentle but be honest. Please don't tell a patient they look good if they don't. Please don't ask them to see the bright side. Please don't tell them how they should or shouldn't feel. Please don't compare one person's cancer or treatment to another. I'm getting off topic. The bottom line – be honest. I'll never forget the moment my friend and client-partner George looked me in my sunken eyes and said, "Oh Jenne, you look so weary." It was like cool rain or better, a warm blanket fresh from the drier. It was all I needed in that moment and it striped me bare of all the other bullshit I was dealing with. It was honest and genuine and gave me just an ounce of strength – and at the time, an ounce was a lot.

13) Ask some other patient – I think I've forgotten

To close this post, I decided to look back as some entries I made during those months. It turns out, I already answered this "what can I do" question a while ago … two treatments in as a matter of fact. I answered it in a post called Frequently Asked Questions of Cancer Girl.

Q: Is there anything I can do for you?

A: Yes. You can check you lymph nodes often. You can tell your spouse you love him or her. You can be grateful for the little things. You can make a donation to your charity of choice. You can smile at the bald woman at the mall. . You can count your blessings. You can stop taking everything personally. You can stop worrying about if you have the right dress or the right shoes or the right car. You can listen to someone when they are talking – really listen. You can tell your child it is okay to ask questions to the lady that looks different. You can give someone a second, third or 70th chance. You can hug your kid when she spills chocolate milk on her t-shirt. You can tell your dad thanks …for everything. You can send someone a card the next time they are going through something and just say "I don't know what to say but saying nothing isn't an option." You can tell your mom you are proud of her. You can open the door for someone else. You can remember that we are all connected. You can ask for what you want instead of complaining or pouting. You can stop trying to be who you aren't. You can say thank you to the waitress, the doorman, the person who holds the elevator. You can give someone else a break. You can worry a little less and start living a little more.

 

You can do all these things for me. And I'm going to try to do them for myself.

So there's that.

THE ORANGE DOG AND THE WOMAN IN PINK

I spend the majority of my time with cancer people.  People who either have, have had or are in some way dancing with the disease.  Each weekend I stand on a stage and gaze out at hundreds – sometimes thousands – of faces etched with expressions of pain, sorrow, hope, fear, anticipation, joy and sometimes a combination of all of the above.  It's fitting.  Cancer uses every emotion in the rainbow and always paints a unexpected picture – half Dali, half Rembrandt and all covered in obscene graffiti.  Or maybe that was just my cancer.

 

Anyway, I find it ironic in a way, that I spend so much of my time with cancer people.  Deep down all I really want to do is run as far and as fast as I can from the whole thing.  Deep, deep down I don't want to associate with cancer in any form.  Deep, deep, deep down sometimes I even deny I ever had cancer.  And deeper than that is some stuff my mother did to me – like allowing me to wear coolots and a matching vest when I was a kid.  But despite me desire to be away from the whole thing I'm bathing in it, eating a tasty stew made from it and wearing it as a hat each and every weekend.

 

The Orange Dog That Lives With Us is a dog by definition.  She is canine.  She has 4 paws, 2 ears, and a snout.  She also has a cute little puppy face.  She's not tall, but she's not short either.  Her coat isn't long, but it's not short.  She's not a small dog but you wouldn't call her big.  She's the goldilocks of dogs. Right down the middle. She every dog. But she's the least dog-like dog I've ever known.  And I say she "lives with us" because we all understand that this is her choice.  We don't own her.  She is simply tolerating our presence. 

 

The Orange Dog really doesn't know she's a dog.  She thinks she's a cat.  She was raised around cats.  She has a very cat-like personality.  She's standoffish.  She's rather rude at times.  She doesn't really want to be petted, or talked to, or acknowledged.  She's content to be over here, thank you very much and you can just stay over there.  If she had opposable thumbs I bet she'd be a writer and she'd  pen large tomes thick with philosophical insights much too significant for the average human.  She's uppity, frankly.  And would rather just be left alone. 

 

And once, a while ago, The Orange Dog got out. 

 

Thankfully, she has a tag – much to her chagrin.  And on that tag is our phone number and shortly after she got out we got a call.  It went like this:

 

Me:     hello?

Them:     <pant pant> Hey!  Um, hi … do  you have a dog?

Me:     Yes (said into phone)…. Sort of (said mostly to self)

Them:     Well, we have her <rustle, rustle> (then said away from the phone) … Hold her!  Hey! Hold onto her!  She'll take off again!

Me:     Oh! Okay .. gosh we didn't know she was out … where are you?

Them:     Well, <pant pant> we started trying to get her around Main street … but we're now at State Line.  (pause) Man, that little dog is fast!

Me:     <chuckling> um, okay, we'll be right there.

 

So we jump into the car and take off to go get The Orange Dog.  On the way there, The Hub discussed how she got out (opposable thumb theory emerges again), and where she was going (to live with monks?) and what the chances were that she'd already nipped at someone who tried to "Hold her! Hey! Hold onto her!" (100%).  As we got near to where the caller said they were we saw a group of about seven people – three kneeling, two looking up and down the street for our arrival, and two standing with their arms folded – all gathered on the sidewalk.  We couldn't see The Orange Dog.  As we got closer it was clear The Orange Dog was in the middle of the group –  and the three kneeling people were holding her and, get this … trying to pet her and that's when I called our attorney friend to let him know he'd probably be defending us in dog court.  We pulled over and jumped out and began thanking the group for their help.  "She's really scared!" one person said,  "see how much she's shaking?"  I couldn't bring myself to tell them that she wasn't shaking from fear but from disgust.   The Hub scooped the dog up and tossed her in the car.  We shook hands, thanked them again and then headed home.  On the way back we laughed like little children.  Poor Dog.  "I bet you'll never do THAT again!" The Hub said to her and she sneezed and snorted in the back seat.  It was her worst nightmare … imagine being TOUCHED and PETTED by LOTS of PEOPLE … sickening!  Once we got home she trotted deliberately AWAY from us and into the bedroom to sip a brandy and calm her nerves.  We didn't see her until the next morning.

 

She's a dog.  But she wants nothing to do with being a dog. 

 

And for all the making fun of her I do, for all the times I've said, "I don't get it!  Why doesn't she want to be loved?"  for all the moments I've thought she's crazy or twisted or just plain dumb to want to escape the very characteristics that define her, I have to say … I get it.

 

Sometimes I feel just like her.  All I want to do is run gleefully down the street with my tongue hanging out and my legs pumping as fast as they can.  I want to flee any mere idea that I was a cancer patient.  I want to run far and fast from this disease that seems to have followed me and tripped me up my whole life.  I want to avoid, escape, erase this defining characteristic from my life. 

 

And yet, each weekend I pull on my big girl cancer pants and head out to meet with, talk with, walk with hundreds and hundreds and hundreds of people who are liquid with stories and dripping with emotion.

 

Jen from Arizona who had a clean PET scan after her first bout with cancer and then 3 months later was diagnosed at Stage IV (there is no stage V), who is now cancer-free.  Again.

The man from Tampa who walked The Breast Cancer 3 Day 2 weeks ago in memory of his wife – who died six days before the event.

Matt from Virginia who walked last year with a picture of his mom on his t-shirt.  "Walking in her honor … she's my hero!" his shirt said.  And this year the same picture on a different shirt "Last year I walked in her honor, this year I walk in her memory."  

The two girls I met at opening ceremonies in Boston who met last year on the walk because they were tent mates.  They struck up a friendship in 2007 since they had so much in common.  Similar life stages, similar backgrounds, both walking in memory of their moms.  They have even more in common now. One of them was diagnosed with breast cancer September last year and the other  was diagnosed in February this year.  They both walked together this year, as best friends and as survivors themselves. 

The man in Michigan who was my ASL interpreter who began weeping during opening ceremonies and had to run from the stage after we all said the names of the people we were walking for out loud into the morning.

The woman who was sitting at a cheering station this past weekend in Arizona in wheelchair, bald, pale and somehow clapping and her husband who stood beside her saying softly to each walker "don't you quit now … don't you quit."

 

The stories go on and on.  They break my heart.  They make me angry.  They give me hope and they make me sick.  I should find comfort.  I should find healing.  I should be able to roll around in the camaraderie but instead I shudder and shake.  I am a cancer survivor.  And I want nothing to do with it. 

 

 

And as I typed that last paragraph The Orange Dog  walked slowly from the bedroom where she was sitting calmly by herself and laid down on the rug near me.  It can't be said that she came out here to be with me but when I reached down and patted her head she actually nudged into nose into my hand.

 

Maybe there is hope.  … for both of us.

CUTTING CORNERS

I am so cutting corners with this post.

Just like last year, being on the road for The Breast Cancer 3 Day is putting a mighty mighty wrinkle in my blog posting. The complete stinky about it is that I have TONS to say and GREAT stories to share but a lack of time (and, let's face it, energy) to put my thoughts together.

 

It's not just my blog that suffers, my friends suffer too. well, "suffer" might be taking it a little far. But it's true, friends with whom I usually have long, significant email exchanges with get bupkis during this season of my life. Sometimes less than bupkis. Bup. Recently one of those friends sent me a message with 5 questions in it and instructions to just answer those 5 questions. I, of course, haven't done it yet. Because that's the kind of friend I am. A sucky one.

 

So today, instead of ignoring this lonely blog for yet another day, I've decided to post. And in an effort to kill two birds with one post, I'm going to use this post to answer those 5 questions.

 

I know. Lame. And if you're disappointed, imagine how my friend feels.

 

Here are the 5 questions:

 

1. What do you on Day 2 of the 3-days?
   
2. Where would you rate your faith on a scale of 1 to 10?
   
3. Anyone ever say you remind them of Christina Applegate?
   
4. What are the statistics on the recurrence of lymphoma?
   
5. Have you missed "GET OUT!"?
   

 

And here are my answers:

What do you on Day 2 of the 3-days?

Well, day 2 of the 3 Day is a GREAT day! For the walkers and crew, it goes like this … showers and breakfast start usually around 5 am. (They shower in a truck, by the way. We set up camp for them and it really is an amazing site – shower trucks, hot meals, dining tent, medical, a post office, internet access at our 3 Day Café and much more. It's really cool. Oh and they sleep in pink tents.) Okay so Day 2 starts bright and early with a hot breakfast, some stretching and the route opens usually around 6:30 or 6:45 (once the sun is up). Some people hit the route early and some wait a little bit. Regardless everyone has to be out on the route by 8:00. Now, as far as what I do, it depends. Sometimes we'll have early morning TV interviews at camp (I've done some live shots as early as 5 a.m.). Sometimes I'll head over to camp early to cheer the walkers out onto the route. Sometimes I walk on Saturdays and if so, I like to leave camp around 7 a.m. Other times we'll have interviews at certain pit stops so I need to be there by a certain time. At some point, I'm out on the route either walking or doing interviews or just hooraying. There are pit stops every few miles so if I'm not walking, I drive to the pits so I can talk to walkers and crew there. I always try to get to the lunch stop because it is a good time to connect with participants … they usually stay at lunch for a half hour or more so there is a lot of time to talk and connect.

At some point on Saturday I take a shower and get ready to head back to camp. I get back to camp usually by 3:00. The first walkers arrive in camp usually between 1:00 and 2:00 (they are the fast ones! Don't get in their way … they will knock your pink butt down!). Once I get into camp I head over to the stage to get the latest information about the route, announcements, etc. I put together my notes for the camp show I host that night. Camp show includes logistics (weather, route info, closing info, special announcements, etc.), participant stories, karaoke finals (don't ask) and a dance party. I really wish you could see camp show sometime … it is the perfect combination of awful and wonderful … like watching Bill Gates in those new commercials he does with Jerry Seinfeld. You don't WANT to like it but you laugh in spite of yourself. I heart Saturday night camp show. I really, really do. Something always – ALWAYS goes wrong with camp show … and I think that's what I love the most. You never know WHAT'S going to happen.

So somewhere during all of that prep, I grab dinner off the line and sit with participants who've completed their 20 miles for the day and talk with them about their day. That part is so awesome. I get to hear all the reasons people are walking and, as you can imagine, those reasons are often so emotional. Then right around 7:00 p.m. we start camp show. Camp show goes until I start the dance party (yes, they actually dance after walking 40+ miles in the past 2 days) around 8:00 and then once dance party is rocking, I sneak out and hit the sack.

 

And that is what I do on Day 2 of the 3 Day.

 

Next question:

 

Where would you rate your faith on a scale of 1 to 10?

 

Such an interesting question. Great wording. My faith is as strong and vibrant and solid as ever. I guess that makes it a 10. It does make me think though – what is faith? I know by the definition according to Hebrews is the substance of things hoped for and the assurance of things not seen. I've always loved that. So poetic. So meaningful. But what does it really mean? Going through some tough stuff in my life (miscarriages, death of loved ones, heartbreak, cancer treatment, blah blah) I guess one would expect me to either have 1) given up on my faith or 2) have a faith "stronger than ever". I have to say it's neither. I feel like my faith is the same faith I've always had. I don't attend church regularly nor do I feel like I'm defined by my religion but my faith … that is as square as ever. Did my faith ever falter during those tough times? I don't' know. I just don't recall. I've never asked why when things happen. I just don't see the good in that. You asking the question has really caused me to think …

Once during treatment I went to church and the sermon was on Faith. And I just recalled I sent an email to the pastor after that sermon. Let me see if I can dig that up. hold.

Here it is … read it. I'll read it too and comment after

 

October 4, 2006

Dear Dan, 

I've been going through chemo for 3 months.  It is black and hard and painful.  Every ounce of strength and energy I had was used up just walking into the first treatment.  I sit in that chair every other week and let a nurse plunge a needle into my chest and pump poison into my body in the hopes that it will find and kill the killer inside me.  The effects are nearly immediate and with each click of the clock I lose my grip on any joy and good will I brought in with me.  It's like someone opens valves on the bottoms of my feet and every good thing about me drains quickly away.  There is no platitude, no scripture verse, no home-cooked meal brought from well-meaning friends that can make this better.  

 

The effects of the chemo last and are getting worse with each treatment.  It is now a full week before I begin to feel any bit of energy again.  It is days before I can eat.  I haven't slept well in months.  Along about the time I begin to feel like myself, I have to walk in again.  Sit in the treatment chair again.  Taste the poison.

 
 

I ache.

I'm weary.

I'm so worn and tired.

 
 

The big, fat, overflowing bank accounts I had just three months ago of energy and stamina and strength are used up.  I am bankrupt. 

 
 

And I'm only halfway done.

 
 

The chemo is doing its job.  For that I am so grateful.  This is not a death sentence. The chemo is ruthless, fierce.  It attacks and attacks and attacks.  It is not giving up.  It takes its work seriously.  It is killing the cancer inside of me.  But.  I fear it is taking me with it. 

 
 

And this is how I wake up each day. Fearful. Tired.  Worn. Used up.  I feel worthless. You know that gunky sponge you keep around sitting on the sink way too long?  It's smelly and bacteria-filled and falling apart.  I long to feel like that sponge.  Gunky would be a step up.  My bones hurt.  My body hurts.  My heart hurts. But I wake up anyway.  And I try.  Oh God, how I try.   I put on a smile.  Each day I get dressed.  And each day I give my darling, fabulous, amazing, long-suffering husband a rating from one to ten on how I'm doing.  I inflate the numbers – for his sake.  For my sake. 

 
 

This is how I wake up.

This is how I endure the day.

This is how I go to bed.

 
 

And this is how I enter church on Sunday morning. 

 
 

I do it.  In spite of it all, I do it.  Do you understand what I'm saying?  I do it.  I get up – when all I want is to lay still.  I smile when my mouth is full of sores and my gums are bleeding from the chemo.  I talk to people when I only want to scream and hit things – them mostly for saying dumb things or staring at my hairless head.  I tell myself, just endure, just endure, just endure.  I haul my body around when it feels more like a carcass than a body and I engage in life.  Only by sheer will, raw guts that come from deep inside of me am I able to live out each day.  I am white-knuckling my life.  Just barely holding on.  But I am holding on. I am doing it.

 
 

And then you tell me I'm using a crutch.  You tell me I'm putting my faith in little things – maybe big things, but not the biggest.  You tell me to transfer my faith.  That's what you tell me, standing there looking healthy and vibrant.  I resent that glow in your cheeks and if it weren't for the camaraderie I feel with you and your big bald head well, I may just walk out of this joint.  This is not new information for me, Dan.  I know about faith.  It's not like I don't pray.  I have a vibrant prayer life and a growing spiritual life.  I put my faith and trust in God a long time ago and as He said, He's never left my side.  I began arguing with you silently on Sunday.  I was defensive.  I found myself yelling in my head "I DO that already! And I do THAT too!  I put my faith in God, I always have!" I screamed in my head.  "I TRUST!" I said "I DO believe.  I have faith!"  But somewhere along the way, once I'd stopped screaming and started listening it hit me.  God whispered, as He always does, and just like that I realized a profound truth.

 
 

I have fallen victim to the "God Ands" I've been putting my faith in God, sure, but just to back that up … you know, just in case, I've also been trying to muscle through this.  I've put my faith in God AND myself … in God AND my positive attitude … in God AND my darling, fabulous, long-suffering husband.  In God AND so many things.  Like an add-on, and extra boost, an additional shot of espresso in my morning coffee. 

 
 

What I need is a "God Only" faith.  A faith that says God only will sustain me through my next treatment.   God only will cradle my weary head and heart.  God only will find me in my blackest and darkest night and walk me home.  God Only Faith is so different from God And Faith. 

 
 

I don't know how I will go from God And to God Only.  And there is my doubt - which you've told me is a part of faith.  I've done God And for so long.  But I'm willing.  I'm willing.

 
 

 

Well, there you have it. it answers nothing for me and probably nothing for you either. I guess in my darkest hour my faith was exposed for both the strength and weakness it contained. I'm sticking with my first answer. On a scale of 1 to 10 I'm saying 10.

 

Next?

Anyone ever say you remind them of Christina Applegate?

 

Now that one is easy. The answer is no. No one. However! Someone a couple of weeks ago told me I look like Lucy Lawless. Yes, Xena, the Warrior Princess! I'm so all over that. I'm so

all

over

that.

 

Jenne            Lucy

 

What are the statistics on the recurrence of lymphoma?

 

Oh, friend. How gentle you are. How softly you ask what I wish I knew. I can only tell you what I've been told. It depends. I had some complications of my treatment – namely, bleomyacin toxicity. There is some evidence that people who suffer this complication have a higher risk of recurrence. I could put numbers on it for you but I'm not going to. I just don't want to. I don't want to put that out there. Let's just say, they are higher than I'd like. That's the bad news. The good news is I'm now a year and a half without recurrence and that's a really good sign. Most recurrence happens in two to three years after treatment. So there you go. Together, let's cling to that.

 

Have you missed "GET OUT!"?

 

Ha! Yes! Of course I have. And that story will remain between the two of us. Stick with me, old friend. I'll be back.

 

Love,

J'