birthday to me.

Today I turn 33.

I have had a bad feeling since I left to get my PET scans yesterday. It never went away. I called the Dr.'s office this morning and pulled the birthday card (do those exist?) and told them I just had to know the results today so I could relax.

They called me back all right. My Dr. is in India so his partner, a female with a beautiful voice kindly went over the results. "So...it looks like there are a number of places that show metastasis. This is a very different scan than any of your previous scans. We see cancer in the hips, the femur, a couple of places in the liver, a spot in the thigh, and maybe some possible places deep in the chest."

I thought when this news came I would say something eloquent, brave, or otherwise interesting. But no. "Oh...that...sucks." "I know, I'm so sorry I had to tell you over the phone, it's only because you requested." I asked if we needed to biopsy one of those 'spots' to see if it was for sure cancer. She said no, everything is consistent with cancer. I was worried that my surgeon was out of town, but basically, we are beyond surgery here. We need a systemic treatment that will work. Fast.

I spent a few hours in the hospital today getting a brain MRI (please leave my brain alone!). It was a pretty pathetic scene. My head was strapped still for 30 minutes. I was alone in a small tube with huge thoughts and loud noises. I soaked the pads they had on the sides of my head with tears. Half way through the scan the tech said through his microphone, "Are you doing okay?" "Yes." "Oh, and happy birthday! I just noticed that!"

The American Cancer Society is the official sponsor of birthdays. I used to be strict about birthday parties. The kids understood they could only have a big friend birthday party when they turned 4, 8, 12, 16, and 18. The other years we could do something fun with a friend or two, or have a family party. Cancer changed that rule pretty quick. When we have a birthday, any age, we go big. Where every you want, with whomever you want. Luckily they don't have expensive tastes yet, and only invite boys so we don't really have to impress. Every year is a miracle and precious gift to be celebrated!

When I came home tonight the boys ran up to me (we had talked with them on the phone about the news) and with big smiles and hugs saying "Birthday! Birthday!!" They explained they couldn't say happy birthday, because it wasn't happy at all. I include a video from tonight. They wanted to sing the song without the happy.

I haven't taken my coat off all day because I have these nervous chills. I am hugely distracted and confused. I would be half way to California by now if I didn't have to get this all sorted out here. Is the sun shining somewhere? Is there a girl in a sundress on some beach collecting shells? Are her children digging motes and laughing in the background? Does she have an ugly mole sticking out on her back? Should we not warn her?

Christmas stories 2011

We have had a lovely Christmas. Luke didn't end up getting a really big gift (I listened close when he sat on Santa's lap, "I want a servant to bring me a present every day!" And then he laughed at his joke he had probably been planning all night). But after he had opened his modest presents (mostly board games) he ran up to me and gave me a big hug. "You know what I wanted for Christmas, mom?" "What?" "Everything you gave me!"



You might notice from the above picture that we have a little Star Wars love over here. Here is one the nativities gracing our piano.



My kids had a great time buying each other presents. They do this with very different motives. We are lucky Luke spent any money on his brothers (he did find what he wanted first, and then made sure any other presents fit the remaining budget). Last year Luke decided he wasn't going to buy James and Sam anything. His brothers were shocked. James got an angry look on his face, "But Luke, that wouldn't be fair! We are buying you something!" Sam looked at both of them confused. "But Luke! Don't you want to see the look on their faces when they open your gift?"

I guess I don't write enough about Sam, but boy this kid has a big heart. Here is what I found in his book bag yesterday. I asked him what he was supposed to write on it, he said just what his Christmas wish was, toys, travel, etc.



I save everything he writes because his spelling is so creative. "I wish that nowon wod get canser. Because it wod help a lot of people."

Josh has never been able to surprise me with, or even(according to him) come up with just the right gift. I do love everything he gets me (mostly because he always includes a romantic card, and after 20 years he still finds new ways to say he loves me), but he is never satisfied with his gift, and usually, I have already found out about it (it's as easy as the google search history).

But this year he had a dream. The week before Christmas he dreamt he went to the jewelers and bought a string of pearls for $2,500. But he wasn't excited about it because he was so worried I would be mad about the price. He woke up and immediately started to retell the dream. Of course the whole time I'm beaming up at him in yesterday's smeared mascara, imagining him clasping the necklace around my neck under the Christmas tree lights, taking me by the shoulders, turning me around, pushing me away from him to have a good look. Eyes go from the pearls to my shining eyes, to the pearls, to my glossy lips, and those he cannot resist. Kissing me big on the mouth he whispers "They so perfectly suit you, darling!." But I snap out of my fantasy when I hear, "Well, you wouldn't wear pearls anyway." My eyebrows shoot up. "Would you?!" "Wouldn't wear pearls!!! Me?!! I've been dying for pearls since Matthew Cuthbert gave the most beautiful set to Anne Shirley in the upstairs room at Green Gables! And that was like...a hundred years ago!"

So yes, under the tree Christmas morning, I had a sting of pears. The perfect gift. Even if it wasn't a surprise. Stay tuned, Josh has now figured out to keep those kind of dreams to himself. 19 days till my birthday. But no pressure or anything Babe!



Christmas morning Josh and I had to speak in church, so I put them to use right away. Josh fumbled with the clasp, so I ended up getting it on, but he did give me a big, lusty kiss.

The truth is, I did get a surprise for Christmas. A HUGE one, that I hope doesn't come across as depressing. I got an email right before Christmas from the nurse at my oncologist's office. He said "Merry Christmas-your tumor tested positive for the BRAF mutation". WHAT??? When I researched my type of melanoma (spitzoid) the study I read said 2 of 17 or something like that of the spizoid melanomas had the mutation. And so I thought I certainly would fall into the larger category (why? I seem to always be in the small percentages). In all of melanoma there is about a 50% chance of having the mutation. Any way, I have read more articles that are saying it is not as rare as I thought in the spitzoid melanomas, and who cares?! I have that little mutation! What does that mean for me? They approved in 2011 a medication (zelboraf) that interferes with the signaling pathways of the cancer cell. It is not a cure, but a miraculous drug that can shrink melanoma tumors quickly and without chemo-like side effects. It is an awesome drug, extending life in half of the patients who are BRAF positive. Unfortunately, eventually the body finds a way around it, and the cancer comes back. Trust me, I never want to get to the point of using it. But I felt like someone just handed me months of extra life. And what could that be? An entire dream trip? An extra summer? Another holiday season with my babies? I cried when I opened the email and thanked God for the best surprise I've ever had.

time for Christmas

I tried to simplify Christmas this year, but it got way too complicated. So I will be scrambling this last week to get "it" all done. I loved the old days when parties, decorations, presents, and treats would all magically appear. Here's a little secret: It's not magic, it's moms. But you know what? It is all totally worth it for this moment:


Christmas morning 2010

I have had a hard time figuring out what Luke(6) wants this year. He gave me some ideas months ago, but he can't remember those, and hasn't been able to come up with anything recently. Today he came in the door after school dragging a life-sized elf he had made from construction paper. "Where are we going to put this mom?" "Oh! Wow...(that's so large, and we have such a small house)...you know...it would be darling...anywhere." On it was his Christmas list to Santa which simply read "nerf gun." So tonight as we were laying in his bed illuminated by the the colored string of lights above his window, I asked him, "What kind of nerf gun?" "Oh, I just wrote that because I couldn't think of anything to write." "Well, what do you want to ask Santa for?" "Well I can think of something." "Oh?" "It can be used in all the seasons." "Oh?" Dramatic pause. "A hug and a kiss from mommy." That deserved 100 tiny kisses and great big bear hugs on the spot. "Silly Luke, you can have that any old time!" But as I walked out the door my heart sunk a little. I guess that may not necessarily be true. I feel very grateful that this year he can have that and presents too. Now just to get that perfect present...

This is the first year I haven't had to answer the question "Is Santa real?" The boys talk amongst themselves, discussing what everyone is saying on the bus about Santa. Even Luke joins in, "There is no way. Flying reindeer? Come on!" But after these conversations(carried out with tons of confidence in their logic)I do see doubt in their eyes.

I, for one, will be sad to say goodbye to Santa. Especially because the simple mention of "you better not cry, you better not pout" worked every single time on these three. We have always had a pretty well behaved household in December. It does seem a little easier this time of year to be good, doesn't it?

p.s.

We dropped off a secret Santa present the other night. The boys planned out their best get away moves and hiding places. "But just in case they see us..." Sam said seriously, and the other two leaned in nervously, "We better have some snowballs in our hands." James got it. "Okay, right. To hit the door to swing it shut?" "No. We go for their face." Oh boy.

heaven help us

Steven had a fall last week and broke his leg. His surgeon looked at it this morning and decided they needed surgery in order to fix the bone correctly. And so, Steven was admitted to the hospital again and had his femur bent back into shape, his screws and plates taken out, and a cast wrapped again around the already beat up leg. This will mean 8 weeks in cast, and very little physical therapy. The physical therapy that they have been working on so hard to get him walking again. Such a set back. Just when he was feeling good and happily jumping back to his old routine. Can the kid just catch a break? I would throw him mine if I could.

Today I find myself uttering the same prayer I wrote at the beginning of this blog: Heaven help us through this year. And the next.

give thanks

Yes, yes. A lack of posts. But not of thoughts. Or of events, really. Nothing big or deep, just beautiful every day things going on around here.

I started a post on Thanksgiving, which turned into something complicated and is going to require some time to finish.

But I want to make it known that I was so grateful last week. Like I had never been before. I had to keep forgiving myself every time I remembered that I have been a spoiled brat all my life. Spoiled in every way: health, love, family, money (not too much there, but there has always been something in the bank). It's not the fact that I've been blessed with so much that makes me sick (naturally), it's just that I didn't realize how good it all was. That is the brat part.

Well, I continue to be spoiled. I have an abundance of all I could ask for. But I refuse to be a brat. I know how good I have it. I appreciate it differently now. And that makes everything so much better.

I was very grateful to be grateful. Does that make any sense?

yellowstone

I'm sure many of you know about the "Make a Wish" foundation. They grant wishes to children facing life-threatening medical conditions. They try and make it possible to meet anyone, do anything, have anything, or go anywhere (there are limitations, but I don't know the rules).

Can you imagine someone asking what you want?

So it has been fun to talk with Steven about his wish. From the beginning he seemed sure, "I want to go to Yellowstone." Sonja and I had to think quick. Yellowstone?! That is only 6 hour drive from our house, and a super cheap entry fee. "But Steven, we will take you to Yellowstone just as soon as you are done with chemo. We can do that as our celebration trip!" This seemed to satisfy him for a while. He has had lots of different ideas since of what he is going to wish for.

So at the conclusion of chemo we set out for the long awaited trip. Don't get me wrong, Yellowstone is a very incredible place. You really do have to make that happen if you haven't been there. There is a reason the country set the land aside for the first National Park. The experience (at least with little kids) consists mostly of driving around the park looking for wildlife, and walking along a series of boardwalks to stare at the earth. And somehow that is enough to make it super fun.

Yellowstone has half of the world's geothermic features due to the huge volcano it sits on top of. The landscape is so strange, sometimes you think you are on the moon, or in some lost, burning forest. There are breathtaking landscapes at every turn. Buffalo roaming the streets. Beautiful colors made by bacteria colonies in the water below. And then of course, there are the geysers.

Steven was the perfect guide around the park. He loves non-fiction and has read up on all aspects of Yellowstone. He has some sort of crazy interest in the geysers. Their names, when they go off, why the go off, etc. He was happier than I had seen him in 9 months. He trooped around with his crutches, clinging to his geyser guide, bugged that we would move on when he only had a few minutes at a place, or if we skipped something. We were all pretty pooped by the end of the day, but he just wanted to keep on going.

The last day, while in our van, he was struck by a brilliant idea: "I know what I could ask for for my make a wish! I could ask to name one of the lesser known mud pots! And then of course..." A large grin crept over his face, "they would have to take me here to see it...."

So, there was a little back fire situation, which has been known to ruin some of my better ideas. We will see what he decides to wish for in the end. I think he has to decide in the next two weeks. Dream big Steven!

and the news is....

GOOD! They saw nothing. I am so relieved. This gives me Thanksgiving, Christmas, and my 33rd birthday before I have to go in for another scan in January. So happy!