Monday, August 30, 2010

It had to be me

Who better to get this insidious disease then a biomedical scientist? I go back and forth between feeling like the luckiest and the most unfortunate S.O.B. to ever get angiosarcoma. I get to pour over all the primary literature and get a feel for what is known and what isn't known. The latter far outweighs the former and the former scares the bejezus out of me. Because this is such a small field, all the top researchers make themselves available to any freakish question I've thrown at them. I've had the opportunity to talk with the heads of sarcoma at Sloan and Harvard, the two top centers for sarcoma research (need to go to MD Anderson next!). I was able to sit down and look at my own tumor with a world renowned Harvard pathologist who has set the bar for angio diagnostics. The scientist in me is giddy like a school girl at the opportunity to synthesize all of the information that they provide, but the woman in me wants to break just like a little girl.

Saturday, August 28, 2010

I love them more then the universe

It's true, not even a super nova could shine brighter then my babies. How deep is a mothers love? Endless, immeasurable...we'd have better luck counting the stars.

Friday, August 27, 2010

worth every penny

Being bald is something I've grown quite use to. At first there was the fear of the unknown. Then there was the fear of the known. The slower cadence in the sentences directed toward the poor bald woman, the looks of pity, usually cast from the corners of strangers eyes, the full frontal stares from folks in shock that any woman would willingly go around bald. "Cover that thing up" was so loudly spoken from every one of their eyes. "I could wear a wig if I want to avoid all this nonsense, but what can you do to change the fact that you're ignorant" would usually reverberate in my mind during such exchanges.
Often times I throw on a silly wig or a random hair band as an afterthought before I leave the house. I smile just as often as I did when I had hair, I laugh as frequently, I love as deeply..if not more, so what's really changed? Hair? Really people? It speaks to the girth of our narrow confines when the absence or presence of sinewy keratin redefines a life.
I could never bring myself to wear the "there's nothing wrong with me, every thing's ok here" wig. In the six weeks that I've been bald, that wig has left the boundaries of the guest bedroom 2 times for a total of 20 minutes. It's like wearing a mask..it's just not me.
At the beginning of my adventure through chemoland, I cut my long hair and shipped it to another continent where someone gently wove it into a partial wig. At first, I thought it would be an eternity waiting for my own hair to come back to me. After the first day, it didn't seem to matter. I was having fun with my ridiculous wigs, I was feeling strong sporting my bald head in the midst of a society that doesn't like bald women..even a little bit. When the phone rang and I learned that it was ready and waiting for me at 10 Newbury St, 49 minutes away, I was mildly excited. O.K., one more thing to wear I thought. But then they brought it out and put it on my head. It brushed against my face, it fell over my shoulders, it twirled around my fingers just as it had always done. I guess I don't care about the perception of Corrie, but I do care about the feel of her! Instead of one more little thing to throw on my head, I have one more piece of myself to call home.

Wednesday, August 25, 2010

hi mommy

Big smiles just for you:)

Kyle and the boogers

When I was training to be a white water raft guide out in Colorado, one of the regiments consisted of a 3 day course taught by local firefighters called swift water rescue training. On the first day of the course, we were taught how to navigate a class 2 or 3 rapid by foot with the help of one, two or more people in order to get to a person who was caught in a foot entrapment. We started with the big group first, 5 of us interlocked arms and moved in a counterclockwise fashion across the rapids. At least two people would always be anchored with their backs against the current which provided support and created an eddy for us to move through. As we gained confidence in this technique, we dropped the number of people in the groups until it was just me and Kyle. So there we stood, arms interlocked, feet shoulder width apart and boogers streaming down his face and dripping onto me. He was 6'3" tall, and I had to maintain eye contact with him the entire time, boogers or not. It was a matter of life or cruel swim down the rapids. There was no wiping of the boogers, he couldn't release his arm long enough for that. There was no escape from them, I just had to go through that portion of my life smeared with mucus. After half an hour, we made it though. I felt like a slugs wet dream, covered in slime. After this fiasco, my friend Jen could tell that I was not right, she kept asking me what was wrong and I kept trying to tell her, but the thought of it, the very utterance made me want to vomit. After a week, I was able to get it out..it took one breath, and the cliff notes version, but I got it out. I guess life just gives us those inescapable moments, but with enough intestinal fortitude, we can make it to the other side.

Tuesday, August 24, 2010

5 minutes later

And it's all good.

Know your enemy

Or so Sun Tzu suggested as an effective strategy for winning a war. So on I marched, to the literature, to the doctors, to the organic section at Trader Joe's. What I've found is that there is a stranger in the hall pointing a gun at me with his finger on the trigger. I can memorize the lines on his expresionless face, I can see the details of his cold steel, I can run toward him or away, but he's always going to be there. For now, I've decided to throw organic vegetables at him.
I talked to Christopher Fletcher from Dana today. He's the premier pathologist who sets the standards for diagnosing angiosarcoma. We talked about all things angio, both before and after looking at my biopsy/lumpectomy slides. In 2008, he published a paper that challenged the long standing dogma in the field which suggested that tumors under 5cm had a better prognosis, and that grade was a prognostic factor. Not so he said. He started to become suspicious of that report by Rosen when he was reviewing case after case of low grade angiosarcoma of the breast. They metastazed too. They killed too. When he looked at the mets of those cases, they still looked like low grade angio, in terms of their morphology..they were still well differentiated, didn't have necrosis, didn't have blood lakes, had no multi-layering of endothelial cells, but what they did have was the ability to penetrate into the surrounding tissue and invade like guerilla warfare.
Crap! And here I thought I had some small advantage, that I leaned ever so slightly in favor of that 30% of people who live for 5 years (even though the majority of them have evidence of disease by that point). Not so I learned today. As you might have guessed, there was a pity party on the car ride home, and another one after those little babies fell asleep. I want so badly to help them with their homework, to give them every chance at happiness. I want to walk at least 20 steps behind them in the mall. I want to pretend like I don't exist when they're teenagers...the key word here is pretend.
I knew it was going to be a rough day, even before my friendly visit with the world scholar. I had to decide which time slot I wanted for Charly's parent teacher conference in November and all I could think about was that it'll be time for my next scan by then.
O.K. then, enough of that. I'm fine now...sometimes it reallllly isn't easy. Thank God it usually is.

Thursday, August 19, 2010

Scanerific

I thought I'd need an anti-anxiety pill to get through the morning. Sometimes momma's little helpers double as cancer's little helpers. We dropped off the girls and went home to Dana (Ted feels like we live there now, we should have our own parking spot at the very least), drank my crystal light, layed down in front of the shameless GE self promoting CT machine and let my body get bombarded by high intensity x-rays...just what a cancer patient needs.
I was sure I'd need that little helper to get through the next couple hours while we waited like nervous kids outside the principals office after sneaking a beer to school...did we get caught? Did they search our lockers?
We were let into the room to wait for the results. An hour passed by and I became distinctly aware that I forgot to put on deodorant. Too late, in walked the doctor with a smile. He told me that everything looked great before he even sat down. No more monkey I thought to myself...just a man who knows how to read a scan and give me more comfort then an electric blanket during a whiteout.
3 more months until the next one. I haven't had 3 months without constant cancer consciousness since this mess began. From the moment I felt that blasted lump until 4:43 pm today, we have been a little out of breath running toward the next test, appointment, treatment, surgery, test, treatment and appointment all the while trying to keep it as fun and normal for the kids as possible. When I kissed those beauties tonight, when I pulled the covers up and felt their warm skin on my cheeks, I caught my breath. I never took that pill....

Wednesday, August 18, 2010

The Princess Tunnel

Charly and Maddy have big girls bunk beds. Charly is of course on the top bed and Maddy gets to sleep, and I use that term loosely, on the bottom bed which slides under the top bunk. That area under Charly's bed is where an instant fort, or if you have 2 little girls, a princess tunnel can magically appear when the bed is moved out a couple of feet. Last night, Ted, Maddy, Charly and I squeezed into the tunnel, put Hook on the laptop and snuggled like squirrels in a nest. I think we've started a new tradition.

Saturday, August 14, 2010

Maddy and the fake boob

I accidently left my prothetic in clear view of Maddy. It was just a matter of time, the temptation was just too great for her. Oooohhh that thing that mommy never lets me play with...you could almost hear her inner evil laugh. It was time to run the errands, and the last part of my primping routine is to don my fake boobie..but it was missing. In it's place were a pair of giant blue eyes and an all knowing smirk. "Madelyn Painter, where is it?" I say in my no shit, I'm not playing around voice. She led me on a wild goose chase through the house. All the while, she knew that it was neatly tucked away in a bag under a pile of crap in the playroom. When I finally discovered her hiding place, she acted as though she had been telling me of it's whereabouts the entire time..duh mom, it's in the bag under the crap..how could you not know that? Never in my wildest dreams did I envision a time when a silicon filled triangle would be the numero uno forbidden fruit in the lives of my children. I guess boobs are just irresistible in any form:)

Friday, August 13, 2010

The gathering

I could have been struck by lightning. I could have won the lottery. Blue ice could have fallen on me from Donald Trumps personal jet. Instead, I got a cancer that strikes 1 in 10 million. A cancer that my very first oncologist refused to consider. A cancer that made him viscerally angry at the uppity pathologist who wrote the word angiosarcoma on that very first pathology report when I was still a child, naive and happy to bounce along toward some undetermined fate....way off in the distance. It seems like a lifetime ago. Time's a funny thing..but I love it regardless of what it lets unfold before me.
One of the first things I did when I was diagnosed was scour the Internet for information about this ridiculous cancer. What I found was a world of hurt, a universe of shitty statistics which dangled time in front of me like a melting scoop of ice cream in the hands of a child on a hot summer day. You just know it's going to end up smeared all over the place, dropped on the concrete and left to melt away before it was fully enjoyed. There was however one thing I found that has profoundly changed my life for the better. The angiosarcoma facebook page set up by Lauren through which I have forged deep relationships with the other members. To say that time is of the essence is an understatement, so we engage each other with no barriers at all, as kindred spirits.
I had the opportunity to meet Alyssa, Lauren and Precious when I went to NYC to meet the real doctors....I almost cried. We met up again in Boston this past week, only this time we added Bethany, Josephine and Wendy. All of us in one place...the worlds largest gathering of angiosarcoma gals. We already knew the outlines of each others lives, but it was incredible to fill in the broad strokes with fine details. We went from 1 in 10 million to 1 in 6. I'm choked up a little thinking about it, I just love them all so much. Can't wait for the next one...

Thursday, August 12, 2010

our perfect little lives

Just scrolled through some old photo's..you know from 5 months ago. I wanted to become 2 dimensional, jump into the photo and whisper in our ears...remember this, remember how light your heart is, how routine even the most crazy moments of your lives are, I want to warn them about the wall they're about to run into...then again, it's nice to see such innocence.

Monday, August 9, 2010

The Crux

There comes a point on every route designated "the crux". Thing is, you never know for sure if you've made it through that most difficult part of the climb til it's over. Sometimes you'll struggle through what seems like an impossible move only to find that a more impossible section lay ahead. Only after the route is done can you say for sure where it was, what you did right or wrong to get through it, what you'll do better the next time. I know that I haven't reached it yet, as tough as some of these sections have been, I can see with clarity that the crux lay ahead...I can feel it in every labored breath, in every inexplicable lump, bump and bruise. At least I found a new climbing friend..thanks Mary:)

Angiofamily

Where would I be without my angiofamily? Totally scared, helpless and alone. I'm flooded and overwhelmed by the love and support from my family and friends, but to spend hours on end with my angiofamily, whether it be in person getting "eyes" in NYC, or over email getting down to business regarding research, it's empowering. Everyone has their own unique way of dealing with crisis situations. Sometimes the biggest crises that people have to weather is how to afford the next and best TV that will allow them to anchor themselves in someone else's version of what reality should be. Other times, it's how to still enjoy life while fighting for that next breath as they let the previous one go, never knowing if it's the last. I've been in the presence of courage personified, of smiles cast outward toward strangers projected from the face of a child who refuses to let fear steal away time, to let fear take away the fact that she has a face and it can still shine. What a trip it's been, what a way to go through life, always aware of it's beauty...how lucky am I that they are here with me and I'm here with them right now. Thank you Lauren for allowing me to find you all:) Thank you to my whole angiofamily for your courage, your strength, and your beauty.

Saturday, August 7, 2010

No More Chemo....for now

I'm sitting in the office of Dr. Scwartz at Sloan Kettering when in walks another doctor around my Age. "Hello, I'm Dr. Dickson, I'll talk to you first and then Dr. Schwartz will join us after". His underling, I think to myself, but what the hell, let's see if he knows more then my Monkeys. I told him that I had a million questions at which time he adjusted himself to get comfortable for the ride. First question..home run, second question, answered in great detail, replete with biochemical and cellular pathways and a clinical trial as the cherry on top. He could talk intelligently about every single concern, every possible theory, all the publications past present and yet to come. Good lord I thought, I don't even need the head honcho, this guy will do just fine. I felt like I was thrown a life raft in a sea of confusion that I had been trying to navigate with little more then an inflatable duck...or monkey. I stopped him in the middle of the session because I was so overwhelmed by his competence that I had to tell him how refreshing it was. He smiled knowingly and continued to listen and answer. When we were done, Dr. Schwartz came in. He was in disbelief that Dana had put me on chemo at all, especially the drugs that they decided on. When I told him that in all fairness, I was told that they had no evidencde that it would work, but that they also didn't have evidence that it wouldn't, he said that that wasn't true. It simply wasn't the case that they didn't know, apparently there's been 25 years of clinical data to show that in the history of all sarcomas treated with chemo as an adjuvant, there has never been one person who has benefited..not 1! He said that angiosarcoma acts similarly to all sarcomas with regard to chemo in a metastatic setting, so it therefore seems plausible that these data could be extrapolated for angiosarcoma. He hit me over the head with a million different reasons why chemo is not a good idea at this point. I was 100% convinced by the end of this visit of 2 things. 1) no more chemo unless this monster comes back. 2) If this monster comes back, Dr. Schwartz will be my oncologist!
I'm a free girl right now. I never hesitated to start chemo, it was never a sacrifice when I believed that it might give me a 0.01% chance of staving off this beast. Had I not tried and it had come back, I would die of the guilt alone. Now I know that if it comes back, nothing I did could have prevented it. It's a flip of the coin now, 50% that it'll come back, 50% that I'll never see it again...at least I can wait for it without shooting chest pains, difficulty breathing, headaches, pain in my femurs, shooting pains in my heart, baldness, inability to interact with my children for days on end, toxins flooding my body and chemo brain. Asta la vista chemo....hopefully we'll never have to cross paths again!

Tuesday, August 3, 2010

come on immune system

you're my one and only true hope. I asked my monkey at Dana whether angiosarcoma patients had been haplotyped, if there was an association with any particular MHC, if there was any predominat antigens/markers specific for the tranformed cells. He said, "eeeeyy eeeeyyy owww owww". I felt like throwing a banana at him.

the betrayal

It took 2 little H&E stained slides to show me her face. I've known her name for quite some time now, but there was always the chance that it was a case of mistaken identity. I saw how eager she was to project herself into perfectly boring spaces. She's much stronger then I had imagined. Now that I know what she looks like, I see her everywhere. At her core is unabashed chaos, a structureless soul with nowhere to go but out..and fast. You can see, as if time moved in the dimention of the slide, how she races with lightning speed. She strokes her long fingers into new territory, fresh fodder for her unrelenting apatite. Silly us for thinking a simple drug could outsmart her adeptness. She's a bit of a fiend, funny how she's me.

Monday, August 2, 2010

The moment, you know, right now!

Time's a funny thing. You can ignore it completely, in fact we as a society have fueled many industries on just that concept...ahhh how to waste time. You can also embed yourself deep inside of it's complex layers. I've played it both ways in my life, still do, although with a time stamp, it kind of necessitates the latter approach. In my case, as I to delve deep into the moment, It's as though I'm as walking on a razors edge. The moment is thinner then a tight rope. At first, that blade digs deep into the soles of my feet, but I have no choice but to move forward, anywhere from the pain of the last step, even if it promises ever deeper trenches. After a while, I develop calluses right in the middle of my feet. When I can keep my balance, it's not too unbearable, in fact all stress, all worry, the what if's, the tragedies that have yet to befall all melt away into the superficial layers where the past and the future pull me back and rip me forward. It's imperative to stay on that straight line, to not look down lest I fall into the abyss, which I've done before. After awhile, I get pretty good at it and the calluses deepen. They become so thick in fact that I can actually stop walking and take a moment to sit inside of time without having to wander in what's become an aimless yet perfectly straight path. It's in these moments that I realize that in all my efforts, in the B.C. days of my life, I did a pretty good job at burning myself into time and that I can bend it a little so I can bring all things past right along for the ride I'm on right now. It's more then recalling a memory, being reflective. It's a synthesis of everything important to me about life. It absolutely fuels my inner peace and my silliness...which I guess is a redundant statement. Ok, now it's time to watch TV while I surf the net....

Sunday, August 1, 2010

when a child needs their mother

When a child cries out for their mother in the middle of the night, it doesn't matter why. A million different things could have found their way from under the bed, the boggy man could have insisted on a visit from the closet, their big bellies could have rumbled them awake. Regardless of the reason, they are awake and they are sad. Only the arms that held them when they were infants searching the universe with a cry for milk can hold them now. Close to our bosom, breast or not, they can feel our hearts beating just for them, they can feel the warmth of our flesh, they can smell our skin, they can nestle into the mommy nook, they can come home. When a mother hears her child cry just for her, she answers the call of millenia.