Maddy day

Just as I suspected yesterday, Madelyn was free for the afternoon, and as I anticipated, I absolutely couldn't run my errands without a two year old, so it worked out pretty good for us. Before all the fun, I went out for what's turning into my weekly pilgrimage to Dana, just to check on those cramps, but they're pretty confident that it's nothing cancer related.....most likely an alien or some undiscovered species burrowing into my abdomen. No biggy. I then picked up the cutest 2 year old on the planet who happens to be.... MADDY! We took the car in for an oil change, she helped me pick out a fake boobie, which I like better then the original, we had a fabulous snack of edemame at Osaka and topped off the afternoon with a walk down to McKinstry pond. We ate cherries on the dock and watched the pits slowly disappear into the green algae. Maddy can through a cherry pit far far. The sun was so crisp and the gentle breeze made the moment perfect. She was right there with me, truly there in every way. We walked around to the other side where we could throw rocks into the water. We could have stayed there forever, but a guy rolled up in his truck brandishing a fishing pole. To our great surprise, he caught a bass on his first cast out. He reeled it in nice and slow, took it off the hook and let Maddy touch it. She was thrilled. We stayed for 3 more fishies and then headed home when we saw Ted driving Charly home. Since we had so much fun with last nights treehouse pick nick, we did it again. Perfect:) Now all I need is a foot massage from a Spanish world cup soccer player and I'll call it a day.

Good clean fun

What a great day. I went to drop the kids off at daycare and head in to work for at least a couple hours when Charly looked up at me with those sky blue oracles and asked for special time. Who am I to deny a child, especially one whose little freckles actually spell the words mommy take me with you. Funny, but at the same time as this, it suddenly occured to me that I had all of these pressing errands that needed to be done with a 5 year old. We went to get the car inspected and then went to PETCO. We didn't need anything from the pet store, but Charly wanted to give names to all the animals, so in we went. After about 40 honeys, 23 lullaby princesses and a few Barts thrown in for good measure, we had completed the task. Every little fish, every rat, every turtle is now officially named.
I dropped her back off with her sister, who will most likely be available tomorrow when I need to run errands with a two year old, and went to catch a matinee with Ted. We saw the karate kid and I have to say, well done Jaden and Jackie. Well done. Ted and I held hands through the whole movie like a couple of kids, it was so sweet. I'm incredibly lucky to have his hand to hold through all of this. It's firm and tender and strong enough to pull me up when I fall off the razors edge.
We picked up the girls and grilled a fabulous dinner which we then ate up in the tree house What a treat.
Finally, we walked into town and got ice cream. Charly and our Neighbor's boy who is 8 sat together on a bench far far away from all of us grown ups. They were like a little couple. There were two little old ladies, at least 50 (that ones for you mom), who took so much enjoyment from watching them. They went home with lighter hearts because of that splash of innocence.
What a great day. No no they can't take that away from me.

Apprehensions from a good friend

I think a common misconception that people have about a cancer diagnosis is that there will ensue an overwhelming feeling of fear, an all encompassing grief and total loss of identity. NOT TRUE! Or at least not in this case study. A good friend of mine is embarking on the most exciting time of her life. I love asking her about all of it, to see the smile that she doesn't even know has crept across her face as she dishes out the details. During one of our conversations the other day, she became hesitant when telling me something about her life that was bringing her joy. She then opened her heart to me and let me know how sad it made her to go on about her happy life when I'm going through this. I get that. I understand how she would feel that way, but I hope I convinced her that all I want, more then anything, is to savor the joys of life...friends lives included therein. I told her that I wouldn't trade lives with anyone, eventhough I have huge question marks dripping like sweat from my pores. I love my life. On some bizarre level, I love this challenge. To all of you who are/will or have read anything I've written about this journey, I just want to ask you to take a little time to savor life down to it's marrow. I did this all the time before my diagnosis and it's made all the difference in the world. You can walk on a razors edge with exquisite balance.

I can't spell

Even with spellcheck I'm screwed. This is my one and only global apoology for it. I'm sorry world, I suck at spelling.

eating raw broccoli

My night time snack of sugary cereal has morphed into raw veggies with a smattering of fruit. Just FYI, it's every bit of fun as it sounds! There is just nothing as satisfying as a baby carrot to chase down raw broccoli. Well, the cancer might get me, but I'm going out with one hell of a clean colon! Cheers my friends, and here's to a fun filled life with many low glycemic indexed meals:)

Stop Worrying!

And that's an order!!! For any of you who are sad, worried, upset, concerned or anything other then happy, STOP IT RIGHT NOW! Life is right now, and I'm living it well. That's all that matters eh? Love ya's

YAY

Hessy! My good friend Heather came up for a couple days. We watched the USA USA USA score the 90+ goal to win the class and advance in the world cup. There were maybe ten other people total in the bar, but the collective joy that screamed out of all of us felt like a herd of elephants. We went to the taste of Shrewsbury street where total strangers who have never heard of Corrie, never heard of angiosarcoma, smiled at me and my children as we walked down the street like any other normal people.... people who have not just had their worlds completely rearranged by a creul twist of fate. I love the support, but the awkwardness that people express around me, the "what should I say, how should I act" gig is getting old. It was really nice to be with someone who really knows me, who laughed at cancer with me.

Make believe stories

The girls and I make up stories from scrath and I decided to write them down. When they're old enough I'd love for them to illustrate them so we can publish them as team Painter:) One of the many activities that brings me peace through this whole thing is writing them down, documenting them for future use. I pour my heart and imagination into them and the girls always love them, so I'm hoping to turn them into a forever bond. There are many little things like this that I'm doing to prepare, like a squirrle for the cold lonely winter, for whatever may unfold. It puts a smile on my face to participate in the future while living in the present!

ahh, to envy "normal" cancer

So this beast just won't rear it's ugly head for any of the modern day tests that we humans use to look at "normal" cancer. It's really something to just not know if this is all over me or totally gone. It's even more insane to think that I'll most likely have to wait for my body to tell me where it is with not so subtle hints...that'll be fun. I already have convinced myself that my uterus is cramping up and that the 2cm mass they're calling a fibroid is now a 6 cm tumor causing these cramps. We discussed a biopsy, but I don't see the point considering that 2 institutes took a total of 11 core biopsies of the original tumor and called it benign. I have to make my peace with not knowing and just jump into chemo with a blindfold. Got to get some ear plugs....

Chemo and fake boobs and hair loss oh my

Here are the lovely details concerning my long awaited trek into chemo land. First and formost, let me be clear, there is absolutely no evidence that any of this will do anything (sounds like BP is controlling my fate, eh?). The doctor literally said that this is only a peace of mind thing and that's it. What a great position to be in. Don't do it, get it again, feel like shite for cheating my kids. Do it, feel like shite for 6 months sans hair, booby and mental faculties, get it back, feel so much better because maybe, just maybe I delayed it for a year, or a month or an hour. Well, I'm the type of gal who will put up with this crap for as long as it takes, even if it's for a statistically insignificant amount of time. On the much needed brighter side, if it does come back it's not an immediate death sentence. The doc's at Dana have had quite a bit of success control tumor growth with various chemos. In fact on my first visit, my doc who has been there for over 5 years said all, I repeat ALL of his angiosarcoma patients are still alive (granted there have been less then 130 people in history of man kind who have had this...what ever). Some have had recurrences, but not all, and the ones who have had it come back are still here too. He also said my hair won't fall out for 6 weeks after my first treatment, so whoopee, the news just gets better and better and better, and I just become luckier and Luckier and LUCKIER! It's all good, I get to lay down and relax for 3 hours ever other week.

empowerment

I've always loved a challenge, so I've posed one to myself. It's the greatest one I've faced yet and want more then anything to succeed. Here it goes... Can I do this well, can I live in the moment without fear for the rest of my life, no matter how long or short that may be? This is something I'll have to work up to, I'm practicing it now as often as I can..I'd say I'm at about 20% so far. Those moments are golden though, in fact, I'm in one right now. Just dropped the girls off for the day and on the ride home I just let it all in. The sharpness of the morning shadows cast from the bright summer sun, the passion of the artists on the radio, the feeling of my leather steering wheel, the deep channels of my lungs fiiling with air, the tears of joy or sadness combined to form some completely new emotion that I've never heard described and can't quite find words for here, the feeling of empowerment. Can I do this well? You bet your ass I can!

sleepy little girls

Ever have a child fall asleep in your arms? It never gets old. So far that has been my favorite reason for having arms. Maddy cried out for me last night, have no idea why, maybe she was scared of the shadows again, maybe the AC was to cold, maybe she needed a mommy cradle. Those big blue eyes turned from panic to contentment in a split second. Her little mouth, as if tasting comfort, puckered up a few times, her little head nuzzled up to my chest, and then off she went, into dreamland. Charly was sleeping with no covers, so I pulled them up and ran my fingers through her beautiful curly blond hair. She was sleeping but still mustered a smile for me. I kissed her a couple extra times and shut the door. They are wonderful, full of life little joys when they're awake, but true angels when they're asleep.

St. Karen

I would like to give a giant thank you to my mommy who took the train up from Virginia the day I called her with my diagnosis and has been here ever since. She's going home tomorrow for a week or two and is coming back to help me through chemo. Mommy, this has been so much easier thanks to you, couldn't have gotten through this without your unconditional love...especially through the pun phase!

fun day

Today was the first day in over a month that I felt somewhat normal. I know I know, "Corrie normal" not "normal normal". My Uncle Bob, Aunt Mary, and cousins Anne and Tom all came out and spent the day with us. They brought me home made guacomoli which means that they're invited back any time. I've always loved spending time with them, but it was extra special to have them at my house and make them do my work:).I think I'm almost healed from the surgery and it doesn't bring me major pain to wear a bra any more, thanks to whatever higher power is in charge these days for that! That alone is a major moral booster. It's hard to motivate when your still hurtin' from surgery, but I'm on the mend folks. Happy to be alive, hoping the same is true for you!

eating healthy

that's something new. I've always lived with the eat like crap, run like hell to stay fit philosophy. Apparently that's not advised for cancer patients...boo-hoo. Goodbye sprite, goodbye hot fudge brownie sundaes, byby my sugary cereal and hello carrots, black berries, broccoli and grapes. There''s quite a bit of evidence that certain fruits and veggies have anti angiogenic effects. Seeing as how my cancer IS angio sarcoma, sounds like a good idea to suck it up and suck down some green tea. I've been pretty good about it as of late. It makes me feel like I'm doing something, fighting. Never fought with hummus before, this could get interesting.

I'm happy

Right this moment! Nothing special, just the result of cute kids, a good husband and of course a wonderful mommy whose been here from the beginning. One day at a time sometimes turns into one minute at a time, but that's ok. Hope you all are able to let go of your struggles and realize that even if you're facing a life ending event, there's still plenty of room for light hearted smiles.

hitting the gym

Or at least tapping it gently on the shoulder just to say hi. Even putting on my running shoes feels good, feels normal. I went back today for a half hour walk using the rail to hold my right arm up so it wouldn't rub my incision and man did it feel good just to move. I even jogged for a couple minutes. Alas, it was only a 12 minute mile for 2.5 minutes, but I can pull out the big C card and still feel pretty good about it. I miss running so much and NEED it to start getting my head on straight. It's the one addiction that I still allow myself to indulge in:)

why blog?

Why not? It makes me feel better to write this stuff down. I know my babies will read this one day (hi future Charly and Maddy, love you!!), I know my friends want to keep up with how I'm doing, it's way easier then a million phone calls any time something new creeps up, it's cathartic...especially when I let this thing freak me out...which it does from time to time. I've joked around in the past about being a train wreck, but I think people slow down around me to get a real close look...morbid curiosity? Pity? Well, instead of letting everyone guess how I'm doing, I'd rather put it out there in my own words. As time goes by, my perspective changes, sometimes for the better, sometimes well, that's not the case. Whenever I have an outstanding test, I freak out a little. Waiting has never been my strong suit, but when it's for the fine/f'cked results it's particularly difficult. When I talked to my P.A. yesterday, I told her that I've been having trouble breathing. It's more that my lungs feel heavy, and from time to time, I'm short of breath or can't catch my breath. Every time this happens, I'm convinced that there are metastasis in my lungs, which inevitably sends me into a panic attack (which I can control just by focusing on breathing through my nose). She assured me that I wouldn't feel it if I had mets to my lungs, they'd show up on a scan well before that. It may sound weird, but that has given me so much relief. She said that my lung issues are most likely a combination of stress, inactivity and removal of muscle from the chest wall. Makes sense. I'm fine today since there's nothing to wait on.....but be sure to roll down the windows and get the rubber in your necks ready for my next test which I'm sure will be soon.

MRI results

Hopefully another round of good news! My PA read me the results of my recent MRI (which I wanted to check on the new growths on my uterus), and it came back as either 1 fibroid or a thickening of the uterine wall, no evidence of it being a metastesis. As good as that sounds, I'm still not 100% convinced, would you be after hearing "you're fine, you're f'cked, you're fine, well actually you're f'cked" as many times as I have with this elusive cancer? I can almost hear your resonding NO. I have an appointment with my surgeon and sarcoma doc on monday, so I'll push for at least a biopsy if not a total historectomy. you know me, when in doubt, yank it out. On a completely unrelated note, everyone at Umass..... beware, there is a certain PI who shall remain nameless, that steals all the good brocolli!

the 2 year old and the incision

Maddy walked in on me getting dressed yesterday and I decided it was time to show her my incision. Her eyes are so unbelievably big and blue and they looked up at me with such empathy. I didn't think it was possible for a 2 year old to say so much with her eyes. In her words, "mommy, they take your booby away?", "it hurts?", "you still my mommy?". Sometimes I can't even look at her because she's so cute. It's like staring into the sun.

no excuses!

Went back to "work" today and man does it feel good to be upright. I'm taking it easy this week, but really want to start running again. Just came from the crappy little cinderblock gym they carved out for lowly grad students where I walked for 1/2 hour on the treadmill...the most exercise I've gotten in over a month. It was so hard to walk like an 80 year old woman, I wanted to run so badly. Oh well, soon enough I guess. I think chemo starts next week or the week after and I want to be at least jogging by then. The prevailing theory now a days is that the more exercise you do, the easier time you have with chemo...we'll see. I would love to train for the marathon I'm signed up for in October, but I think that might be a stupid move. I could see training for a half, but somewhere around 18 miles, I think it does the body more harm then good. Who knows if I'll even be up for any running once I start chemo..again...we'll see...again...the story of my life. Feeling pretty good these days:)

mastectomy results

My surgery was June 1th and I just received my results today, nearly 2 weeks later. The news is GREAT! No evidence of tumor anywhere in that whole slab of boob! They must have done a good job on the partial mastectomy. This made me feel so much better for so many reasons. One of my fears was that they'd see some diffuse tumor throughout the entire breast with tails penetrating beyond the margins and into my chest wall. Pretty f'ing happy that that doesn't appear to be the case. They also took a lymph node and that was negative as well. I had the MRI today to look at those "fibroids" on my uterus. I had the hardest time not cracking up in the tube, I couldn't shake the silliness that Robby and I were cracking up about last night. I love that I can relish in my immaturity with him...even if it means that there are blurry pictures of my uterus in some doctor's files.

charly's 5

Sweet charly is 5. I can't believe it. I used to lament each of the birthdays, wishing they'd stay little forever. I have a different perspective these days and now cherish their growth. I want so badly to see them through their childhood. They're so little and need me right now. I watched the never ending story with charly the other day and in it, the little boy had lost his mother. When I explained that to Charly, her words were, "how terrible that would be". She's so innocent, and I know it's ridiculous, but I can't shake this feeling of guilt that gnaws away at me when I think that they will likely suffer because of me. I know there's nothing I can do, that it's not my fault blablabla, but when you're a mother and so protective of your babies, it's hard not to place blame, even if it makes no sense...especially if it makes no sense. I love every moment I get to share with them. Every time they smile at me, it's a little victory. I guess that's what they mean by being a survivor. No matter how temporary or long, everything that I get to experience, to participate in is a gift.

Go to sleep!

I can hear Maddy babbling away, just as she does every night. I haven't quite figured out the right combination of sticks and carrots to get that little one to sleep before 10pm. Would it be wrong to go back to days where parents got their children drunk before they got themselves drunk?

the little ones

Charly is fascinated by this whole process. What does it look like mommy? Can I see the blood again mommy? Why are there bad cells in you? She's way more ok with this then I expected. When I told her my hair would fall out and I'd need a wig, she insisted on having a matching pink wig and told me it's ok to be bald, because I'm still the same person. She'll be 5 tomorrow, wow. Robby is so supportive, he wore a hot pink team Corrie shirt to school, could care less what people thought. He's such a good kid and an old soul and I'm so grateful to have him in my life! Maddy, well, she's 2, so she's trying to just be 2 and not concern herself with things like being gentle with mommy. She needs uppy and blanket and milk and then she's fine. She's a little comedian and keeps us laughing with her silliness. I couldn't love them more, I couldn't be luckier!

chemo sucko

Had the consult yesterday with my new sarcoma doctor..the other one in on vacation for 8 weeks, must be rough. It boils down to this, they don't know if anything actually works or not because , as I've heard 3,000 times already, no one else gets this kind of cancer, so there's no actual studies, therefore all the evidence they have is anecdotal. He basically told me that I could do nothing and wait and watch, but up to 70% of people will have it come back and when it does, it's just a matter of time, there's no curing it. He said that they have good outcomes there with people who do chemo, but again, he wouldn't tell me what that means. I think they don't want to be haunted by me if I go fast, get pissed afterwards and have nothing better to do in the afterlife. The therapy that he's recommending is a 6 month regiment of Gemcitabine, Abraxane and Bevecizumab, every 2 weeks by IV for 3 hours each. El sucko. Side effects suck too, nausea, vomiting, hair loss, diarrhea, peripheral nerve damage, blood clots, you name it. The thought of doing nothing is not an option, I couldn't live with myself if I cheated my babies for even one month because I didn't want the side effects. There's no guarantees that this will do anything, but at least I will know that I've done everything possible to stick around as long as I can for them, and for chocolate covered strawberries:). I'm back on my feet again..in lab doing nothing...just like any other normal grad student.

mournings

When I wake up each morning, I don't have the pain meds numbing my brain. My mind is always going a mile a minute between reality and the thought that this can't possibly be real. Maybe I haven't fully accepted this yet, maybe our brains are designed never to accept stuff like this. It only takes a minute to shake it off though and get a smile back on my face. Shortly after, I'll inevitably hear those sweet little voices asking me if I want my coffee...just kidding, although getting waited on hand and foot is wonderful, the true joy in all of this is how happy it makes me to hear my kiddies pitter pattering their way toward me in the mornings joyously calling out "mommy, mommy".

DraiNo

I am sooo much happier now that it's gone! You just can't appreciate your body until you get a 7 inch drain yanked out of it. I'm happy again and feel like I'll be back to "normal" soon. I still haven't heard back from pathology, so I don't know if the margins are clear. Later this week, when we know, I'll meet with my sarcoma doctor and develop a plan for fighting this ghost. I'll schedule the uterine MRI for sometime this week too. The girls got new beds delivered today and Maddy has graduated to a big girl bed. She looks so little in that giant twin. I'm so happy to see her through this tiny little milestone, as insignifiacnt as it may seem, it's a part of her growing up, and I got to tuck her in tonight. I'm the lucky one tonight:)

no matter how you slice it

It doesn't feel good to have your boobie removed. Thank God for pain meds, can't imagine what we went through in the days of yore. I don't miss it at all, but just can't wait til I'm healed and can move on from this. I took a shower yesterday by myself, like an idiot. I thought maye it would be nice to sit in the shower for a while after Ted and mom took little C to the dance recital. Everything was fine until I tried to put my surgical bra back on and couldn't. It took me 10 minutes and I guess it freaked me out a little and got me out of breath. Afterward, I sat down and couldn't catch my breath and had visions of cancer dancing through my lungs...good times. Even though I though I thought I was controlling my breathing, I guess I wasn't and it sent me into a panic attack. Never had one of those before. I never knew how physical they are, I tried calling the visiting nurse but they said it would be hours before she could get there. By that time, my body was going numb and my hands began to cramp. I ended up calling 911 just to have someone talk me through it, but they sent 3 towns worth of emergency response teams, silly waste of time. I told them over the phone what was happening, but apparently, they didn't think they were adequately spending your tax dollars. By the time the EMT's showed up 2 minutes later, my hands were so cramped I couldn't hold my phone. So weird and freaky, DO NOT try this at home! They got me breathing normally and within 5 minutes, I was able to sign a release from transport. I was tingly for about a half an hour as though my whole body had fallen asleep. For me, the funniest part of this whole experience was that my 14 year old stepson didn't know any of this happened until he came down from his room a couple minutes after everyone left. By that time, I was sitting in bed watching taxi and eating crackers like nothing happened. I think he thinks I made it all up:) I used to judge people a little bit when they told me their stories of panic attacks, I guess I figured they should just suck it up and be strong. I really thought I had been breathing, that I could control it, but until there was a 200 pound dude sitting there next to me forcing me to breath through my nose, I didn't realize I was hyperventilating. So weird! Yet another fabulous new in my life. Not to worry though, like I said, 5 minutes after they left, it was like nothing happened. Now if I can get the damned cat to stop jumping on my incision, everything would be just fine:)

Danka Shane

You guys are something else, with all your kind words and love and support. I really appreciate it and hope your spreading it all over the place, not just in my general direction (as monty python would do). Been laying around for a couple days now on morphine trying as hard as I can to ignore the nasty drain sticking out of my body. Don't know anything about clear margins, fibroids or treatments yet, but will update this when I do. Just stoppping by to say high.

Post Mastectomy Surgery (Graphic Content)

Good Morning fellow mammals. Funny how man named an entire class of animals after boobs. I guess you're only hyper aware of boobs if you're a man or if you just lost one. They gave me a radical mastectomy--muscle, lymph nodes and all. We'll find out if there is or was any residual cancer in the breast after the biopsy in a few days and whether or not they got clear margins. I have a lovely and stylish tube sticking out of the side of my chest where I can watch blood and other fluid draining out of the tissue where my breast was. The three "fibroids" in my abdomen will be tested today via ultra sound in order to rule out a possible spread to my uterus--small chance that it is anything other than fibroids but we want to make sure.

Special thanks to my post op nurse Josette and to my room nurse, Kelly--you guys are awesome. Team Corrie was fabulous in all of its pink glory--thanks to everyone here and everywhere who wore their team corrie shirts! Also, thanks to everyone who flashed someone yesterday, your silliness is much appreciated (as I am sure the sight of your boobs were).

life is good, here's why for me

So I have to go through this bullshit surgery and get chemo and wonder how many months/years I'll be around, and the list goes on..... but it's totally worth it. I woke up with a smile on my face today and still feel like I'm one of the lucky ones. Somewhere along the line I started on a path that has never failed to bring me back to happiness. It took me a LONG time to get here. I was never intrinsically happy, in fact I was about as cynical and self loathing as you could be. I made a conscious effort to change that about myself and it was actually pretty simple. For me, it only took these four simple realizations: The first thing I had to come to terms with was the fact that no one really cares about you. I don't mean that in a callus way, and of course this isn't true in extreme circumstances, but when you have a conversation with someone and walk away, there's almost a 100% guarantee that that person has refocused their thought process back onto themselves. Try this exercise, try for one day to be cognizant of how much time you spend thinking about yourself. So if everyones pretty much self absorbed, there's no place for them to be thinking about you, so therefore there's no reason to care what they think, at all. There goes insecurity right out the window. Next, instead of beating yourself up, be a friend to yourself. There's enough people in the world who are looking to drag you down into the hole that they're in, but that's really more about them then you. Screw them, be nice to yourself, why not? Enjoy the moment, savor it, it's timeless and therefore dimensionless, you can go as shallow or deep as you want in it baby. Love.