Saturday, December 31, 2011

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.

Friday, December 16, 2011

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) 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?


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.

Tuesday, December 6, 2011

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.

Monday, December 5, 2011

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?

Wednesday, November 23, 2011


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!

Wednesday, November 2, 2011

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!

Friday, October 28, 2011

good signs

Scans were fast today. No Dr.s coming in to consult. No techs changing my position. When there has been question I have had at least some sort of delay. I am going to take this as a really good sign, and hope there is nothing to talk to Dr. about on Wednesday. I will for sure keep you posted after my appointment.

All of Steven's tests this week looked good! We are so thrilled about it.

Monday, October 24, 2011

scan week

The blog has been neglected lately. I thought I would be better at keeping it up with the kids in school, but it hasn't helped much. Hopefully I can start making time for it. I just posted about Steven's chemo completion. We celebrated this weekend with a lovely trip to Yellowstone that I will have to share ASAP.

This week Steven and I have our every 3 month scans. Steven's are tomorrow and mine are on Friday. I haven't had much time to stress about it. There are certainly some moments of panic when I think about how everything could change so quickly. But mostly, I just want to get them over with and enjoy the holiday season until we have to do this all over again. I am trying to read into the fact that the same day we get results (the 2nd) we fly out to Disney World to play while Josh attends a conference. Hoping it will be another celebration trip!

Friday, October 7, 2011

last day of chemo

Very emotional today as my nephew was sung the "Happy Last Day of Chemo" song by the nurses on his unit.

I cried because I am so proud of him. Because he was such a trooper. Because he has a great future ahead of him.

I cried because he will have to use crutches to walk to his car. I cried because he can't have his leg back.

I cried because his family will now get to go back to a somewhat normal life. I cried because people think you can go back to a normal life, but I know it will be hard to find normal again.

I cried because I am so happy for them. Because they can close this chapter. I cried because I'm so sad for them. That they ever had to get mixed up in this mess.

I cried because it's not fair. Because life can be so hard.

I cried because there is such a thing as cancer. I cried because anyone has to have chemo ever. I cried because I can't have any chemo.

I cried because once they sang the song to me. I cried then too, although I didn't know why I was crying.

But mostly I cried because my sister cried. Because she has had to deal with this for such a long time. And she will be dealing with cancer and it's after effects for a long time. I cried because she has been so strong. And just because I love her.

So many reasons to cry today. But HOORAY the chemo is over!

Saturday, October 1, 2011

there is a season

I am a little conflicted to see the seasons change this year. I think of last year at this time I had been craving some big change. You know that feeling? I just felt something had to happen. The biggest change I could think of was a move. Like out-of-the-state kind of move. We tried a couple of things with Josh's company, but neither or them worked out. I tried my best to talk him into Singapore. I was serious and restless.

Now I would be so happy to keep everything the same. Just the same. No one grow up, no one move on. Where is the pause button? I want to push it in September.

But October has made such a good first impression on me!

I have been a distracted driver this week as I can't keep my eyes off these beautiful mountains! "What is going on up there?!" I kept asking the kids.

Finally tonight I got to go up and see what it was all about. Wow. Imagine this: Below me to my right, snow melting slowly into a field of wildflowers. In the distance mountains saturated in the colors of fall. A mountain goat grazes and above him, a double rainbow. To my left I watch the sun sinking on the valley where I live, spilling it's light through rain and rainclouds. The lake is shining and the valley is still green. There is thunder echoing through the skies. It was like I had all the seasons together in one place. A place I see from far away outside my front window every day.

It kind of made me sick that I could have ever been unhappy here.

It's interesting how I have changed since last year. I got to learn all the lessons cancer taught me the first time, again. And they were even more powerful. Even though I'm in the same state, same city, same house...I am in a different place. A really, really good place. Hope I can get some time to explain why I think this is the case.

October is of course the month of my next scans. The date is set for the 28th. I have an appointment with the Dr. November 2nd to get the results (no more waiting for phone calls for me).

I wondered how I would be at this point. Everyone I read about on the internet that has gone through the 'watch and wait' approach seem to agree that "You get used to it." I thought that meant that I would get used to being sad and anxious. I was so wrong. I am hardly ever sad and only rarely worry anymore. And yes, that's pretty easy to get used to.

Wednesday, September 21, 2011

fate is kind...right?

Kind of an anniversary of sorts. September 21st. In 2007 it was the day I found out my cancer had spread to my lymph nodes and was considered serious. Saddest day. In 2010 it was the day they gave me a clean bill of health. Happiest day.

I can't even describe the high I was on. I felt like there was nothing I couldn't do, nothing I wouldn't do, nothing to hold me back, ever again. Like I had all the time in the world.

Well, if nothing else, I lived like that for 6 glorious months. I hope I get to do that again.

My family puts on a little film festival this time every year and my entry was going to be a cute little show of our cancer free celebration at Disneyland.

My story book ending.

Of course I didn't expect the evil villain cancer show up again. BOOOO!!!

The little part I talk to the kids on the couch is a year ago today. I love their reactions to the news. I get a weak cheer for the no cancer news, but watch them light up at the mention of Disneyland. I also love their personalities reacting to the news. James, who would plug his ears when he was 6 at any mention of cancer, is maybe the only one that really gets what any of this means. He thinks about it silently, hiding his face so we won't see any tears. Luke, who insists on buttoning up his polo and tucking in his shirts, is worried about missing school. Sam's shirt is nowhere to be seen and he is ready to take off with the plane today. Are you kidding him? "Who cares? Let's go to Disneyland today!" Love my little guys!

Sunday, September 11, 2011

i will never forget

One decade ago I was in a dental chair getting a root canal, listening to the radio as the twin towers fell. Confused, shocked, horrified, and really very sad, I went home to my 6 month old. I wanted to hold him forever. I wondered what kind of world I had brought him into.

But stories of heroism and patriotism started coming out. And the country softened. And we turned to God, and to our neighbors. And we were unified.

And the more I learned, the more I felt, the more I knew what kind of world this baby came into. One with fear and hatred, yes. But also one with hope and love, beauty and kindness.

One I couldn't wait to show him.

Thursday, September 8, 2011

totally convinced

And suddenly…it’s September.

The beginning of a new chapter. One I knew was coming and have been dreading. It’s called “All the Kids in School”. The baby is in first grade now. So crazy.

That first morning we were all in a rush to get the right things in the right places at the right time. We made it out the door with maybe one minute to spare.

Time for the required and unpopular first day of school picture. I lined them up. Focused them in the viewfinder. It got quiet, everyone froze. All the hurry left me as I stared in awe at my little boys. They stood together, tall and wise and ready to move on. Behind them was the the house they had all grown up in. The one they had all been babies in and totally mine. The one that was constantly littered with laundry and laughter and lullabys. I thought of how older people would stop me in the grocery store or at a restaurant when I was wrestling with 3 preschoolers and have the nerve to say “These are the best years of your life, you know.” How I smiled politely but didn’t for a second think they could be serious. It’s because they dont’t remember I would say under my breath.

"Okay guys, smile!" "Sam! Stop making that face." "Let's try again." "Wait, can we get in some shade?" "Much better." "Luke I want to see some teeth."

"We are going to be late now, mom."

"Alright, yes. You better hurry."

They took off across the street with backpacks too big for their bodies, laughing and running to the bus.

If they would have turned around just then they would have seen their mom frozen in the yard, lost deep in thought. I am having flashbacks. I am feeling again the excitement of a first step, smelling a newborn after a bath, hearing the sweet little sentences only a three year old can compose, enjoying the peace of nursing a chubby baby to sleep in the dark, tasting the wet kisses of three little mouths in the morning. And then a bit of brilliance lights up my face. Because at that moment, as the boys turn the corner and are out of sight, I finally get it. I get what those strangers who have raised kids were saying. And it's not because they had forgotten. It’s because they remembered.

If a little family full of busy preschoolers and babies (we got lots of those in the neighborhood) would have walked by just then, I would have laughed at a sudden outburst by their 2 year old and said, totally convinced, “Oh, you are so lucky! These are some of the best years of your life.”

Monday, August 22, 2011

last hurrah

Summer is always too short. But oh, so sweet.

It has been a wonderful break. We ended it on just the right note. Josh's great grandpa built a cabin in the Sierra Nevadas in 1932 that is still in the family. It is boy Paradise. And the girls like it too. Fishing, boating, kayaking, star gazing, swimming, napping, card games, eating, reading. No cell coverage or internet. Just right.

Saturday, July 16, 2011

Celebrated last night with a hike up Squaw Peak to watch the full moon rise.

From Drop Box

The mountains this year are DELICIOUS.

From Drop Box


From Drop Box

From Drop Box

From Drop Box

From Drop Box

Stupid dog

From Drop Box

From Drop Box

Over Utah County

From Drop Box


Friday, July 15, 2011

This is seriously a crazy ride.

Checked into the hospital this morning having no idea what to expect. They put me in a hospital bed, started an IV, hooked me up to a heart monitor, explained I would get some drugs to make me sleepy (versed and phentanyl, I said yes to both) during the procedure. The Dr. came in and said that they do a CT scan, bring me out of the scanner, mark where the needle should go, get the needle in there (he said it could be hard depending on what organs were in the way, we may have to try and manually manipulate things, or lay on my tummy or something to try and get a straight shot), then with the needle in, run me through the scanner to see if it was in the right place, take some sample cells, and give them to a pathologist to make sure it was a 'good' sample.


He said there is a chance this area lit up on the scan because when they married the CT with the PET it was a little off and it was just showing the ovary again, as the spot was about the same size and right next to the ovary. How big of chance, I asked, of it being something like that and not cancer? He thought as high as 50%. B

So they get me on the CT machine, put a grid paper-thing on my stomach, run me through the scanner once, inject contrast dye, run me through again. I then wait for 10 minutes while the radiologist consults with another radiologist. He came out and said there was nothing he could poke a needle into. A small spot that they would watch in upcoming scans, but most likely just normal ovarian activity.

So within a couple hours I ran through so many emotions. Glad we are stopping on overjoyed.

Freedom!!! Until October...

Wednesday, July 13, 2011


The knot in my stomach is finally gone after a couple weeks! Although yesterday's news was not as good as it could be, I was prepared for much worse, so there were no tears or trouble sleeping.

The Dr. gave me the choice yesterday of doing surgery to remove and biopsy the spot in question, or scanning in couple of months to see if it grows. I asked what he would recommend and he said, "It's a tough call." Leaving the hard choice up to me. I didn't love either of the choices (although he said the surgery would not be as big as the last one) so we are going to see if they can get at it with a needle first. Might as well try.

There are reasons I am not too worried. The metabolically active spot was there on the scans in March, near an ovary, and the radiologist read it as something that can be normal in young women. They are concerned about it only because it has grown.
I think I would be more worried if the same thing was in my liver, or lung, or even if they were thinking it was a lymph node. Because those places make more sense to me.

Not sure what I'm trying to say, other than I'm in a better place today than I have been for a while. Kind of liking this place!

Tuesday, July 12, 2011

results in (kind of)

I talked with the Dr. briefly. There is something showing growth in my pelvic region, above the leg. The surgeon thought this was a lymph node, but the radiologist looked again and thinks it is not. I go in Friday to have another CT and hopefully (if they can get at it) a needle biopsy to see if there are cancerous cells or something else. Of course we won't get the results from the pathology of the biopsy till next week at the earliest.

So a little more waiting. And a lot more hoping.

If this is cancerous and not a lymph node, I guess I would be considered stage IV. If it is a lymph node near where my others were removed, I may stay the same stage. If this is not cancer, I am going to do 29 back-flips in a row. At least. Can't do one now, but no matter.

Monday, July 11, 2011

I guess I should have Josh write the blog. All the facts with none of the drama.

Yes they said tomorrow. I had been out of cell phone coverage for most of the day, and right before the office closed I was able to get a bar on the top of a cliff in Colorado and track down the Dr.'s office.

It was the sweet receptionist who told me they were just talking about me, and that the Dr. wanted to call and go over the results with me tomorrow. And he will be in surgery all morning, so we are looking at afternoon. I was so surprised. I am trying not to read into this too much. But could the Dr. possibly want to just say "Everything looks great!"?

Maybe because there is nothing there, we are in no big hurry? Hoping for this. Can we apply the old adage, "no news is good news?"

I am pretty amazed I held up nicely after the let down. I took the boys to Mesa Verde today and we had such a great time exploring old Indian ruins. I was a little nervous to drag them around all day by myself as I am running out of patience with them (just been a bit stressed out). But I didn't even need patience today, they were so good. I had several comments from strangers on how great they acted.

One couple in a curious accent (Australian I thought) approached me and said, "We don't have children where we come from. And I just thought you should know it is great to see such well behaved kids having fun and enjoying life."

"Oh, yes. Where are you from?"



We are staying at Grandmas tonight, where it seems impossible to feel anything but peaceful. She lives at the edge of a small town with a big yard and beautiful garden. I love that her calm, reassuring presence resembles her environment. Maybe I won't go back.

still no news

Alisa is in southern utah, but she called the doctors office and they said they would for sure call her tomorrow afternoon with the results.

Saturday, July 9, 2011


As we drove into Canyonlands today I let out a little squeal. Look what I saw in the rear view mirror!

From Drop Box

As we drove out of Canyonlands I let out a big sigh. The rainbow-place was covered in lighting.

From Drop Box

Friday, July 8, 2011

nope. not today.

I guess we are waiting till Monday. Luckily we have plans for the weekend, and I'm not stressed about it when I'm not expecting it. And really, at the end of the day, I'm thinking, what is a few more days?

nothing yet

I caved in and called the Dr.'s office. I was blow drying my hair wondering why it seemed so difficult this morning, when I noticed I was rocking like a crazy person. I tried to stop, but I am crazy person right now, so I rocked harder.

So I had to call. And she had to say the results are not in yet. But they would call me when they got them. If not today then for sure by Monday.

Monday? I swear they are going to have to prescribe something if that's the case.

How hard is it to look through the images, write up a brief summary, email it over to the office, call me? Or text me. I just need one word. Positive or negative. Yes or no. Something or nothing. Good or bad. Clean or messy. Sad or happy. Present or absent.

Just let me hear the good news and move on!

Thursday, July 7, 2011


Well, I finished the tests yesterday. I guess I find out tomorrow if I passed.

I combined every trick I've used in the past to get some sort of info out of the radiology techs (who watch the scan as it's happening), but of course they are trained to keep quiet, and I couldn't read into anything they said or did after it was all over. Grrrr.

So I look for clues elsewhere. The sky moslty. Clouds! Kind of bad news gathering. Possibly of some spots in the leg. Back to where we were 3 months ago. Rain! Tears, tears all around for sure. More in the lymph nodes. A big surgery awaits. Sun! Good news ahead for me! Not one thing lit up on that scan! Bright future awaits! Thunder and Lightning?! Sudden and quick destruction! Liver, lung, and brain! Woe is me!

And as fate would have it, the weather the last two days has been sun and storm, back and forth. So I knew for sure what was coming: the quintessential token-a rainbow! Placed either directly above my rooftop, so that my house is centered perfectly in its arch, or at the end of the colors, telling everyone that good fortune and gold can be found here!

Unfortunately, I never found a rainbow. Fortunately, I guess the heavens do not always coordinate with the earth to give silly girls hopes and their opposites.

A small request: Please don't call me tomorrow. I am a seriously ridiculous case of nerves, and I'm not sure if I can take the phone ringing unless it's the Dr.'s office. We will get the news out as soon as we get it.


Hoping I get a call early in the morning:)

Tuesday, July 5, 2011

that among these are Life

This 4th of July I was especially grateful to be living in this country. Grateful that I have as good of a chance as anyone (with my diagnosis), anywhere in the world, to survive this thing.

I love that this country gives everyone a chance. I'm not saying it's perfect, or equal. But it does seem like no matter where we came from, or who we are, we have the chance at The Good Life. Whatever we decide that is.

I love how we take a baby born too early, or a cancer caught too late, and against all odds, try and save that life. And because we have the resources, technologies, and value life, so many times we succeed!

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness."
~Delclaration of Independence

Thursday, June 30, 2011


Scanxiety. You will not find this word in the Merriam-Webster dictionary, but it is in every cancer patient's vocabulary. Or if they don't know the word, they for sure know the feeling. It is the anxiety you get around the time you are about to be scanned. It is nerves, holy cow, to the tenth degree. You make an appointment and as the day approaches things get ugly inside.

Sometimes it takes looking at the expiration date on a gallon of milk for the reality of a date to set in. Like seeing 12/25 is the surest way of knowing Christmas is so close. This milk will still be good at Christmas? No way. This week I have been plagued by mini panic attacks as the date 7/8/2011 stamped on my milk shouts out every time I open the fridge.

The 6th (Wed.) is when I will actually have the scans done, but I should know the results on the 8th. It has crept up so fast. I was just getting far enough away from the diagnosis I could almost forget about the whole thing for a day or two here and there. I could pretend it never happened. And then start believing it. But as the day gets closer, so am I to the reality of it all. And the weight. And the wait. Sigh.

I have had a lot of questions about scans, which I hope to answer here. So what do I mean by scans? They will be doing a full body PET (Positron emission tomography) which uses a radioactive tracer injected into the vein to see if there are any tumors. The scan is expensive ($5,000, thank goodness for insurance!) and nerve-racking, but very accurate. Because cancer cells have a higher metabolism than regular cells, they light up for the scan. They shine through for the camera. And it's the ugliest thing I've ever seen.

Here is what the Dr. pulled up when we were trying to feel the tumor they found in the thigh. At this point it was .8 cm. I think they told me any tumor over a millimeter would be detectable.

The tumor "lights up" with gamma rays? for a PET scan

Why scan the whole body? The location of metastasis in a stage IIIc patient is evenly split between the brain, liver, lungs, bones, and distant skin or lymph nodes. There are other places it could go too. And so they check everywhere. If they see something suspicious, they will biopsy it to determine it is melanoma, and not another kind of cancer. If you have cancer in the lung, it is really important you know what kind of cancer it is so you treat it right. It's not lung cancer just because that's it's location. It's not brain cancer if they find it in the brain, it is melanoma that has metastasized to the brain.

If they don't see any cancer, I don't have cancer right? Why would they think it could come back if they can't see anything? I wish it was this simple, but the tests can only detect tumors, not roaming cancer cells within the body. That is why they do it frequently, to see if any cells are sticking together and hopefully catch that early. They don't use the word remission for melanoma. The term is NED, which stands for no evidence of disease. If there is disease we can't see it. We are big fans of NED.

Why so stressful? You aren't allowed to exercise the day before (and what other stress relief is there, really, for a girl who doesn't drink?). All the apprehension culminates in a fitful nights sleep full of bad dreams. Then the day itself is pretty intense. You are put in a room where they inject radioactive material (my brother the physics professor was kind enough to point out the amount is more than what they were exposed to in Japan, so who knows what the tests are going to do to me), give you a warm blanket, dim the lights, and tell you not to talk (no on is allowed in the room anyway) or read, or do anything for an hour so the tracer can get to where it's supposed to go. And this is when the mind goes crazy. If you could distract yourself before, there is no way to do it now. When that hour of torture is over, don't worry. Just 45 minutes of literally not moving a muscle as you lay in a machine that clicks and ticks up and down your body and occasionally commands you to "take a deep breath and hold it."

And then we have to remember the time it takes to get the results. How fast the heart pumps and the body jumps every time the phone rings. And when the caller ID shows it's the hospital, how the breathing stops, the fingers cross, and you pray it's a nurse's voice and not a Dr.'s as you pick up and squeak 'Hello?'

Things really could go sour next week. My gut feeling? They won't. These tumors were so slow growing, I can't imagine I would have something only three months later. I think my body has been fighting this thing for 4 years, surely it is putting up a good front somehow still.

Even though I'm convinced, if you find yourself on your knees sometime next week, and happen to remember me as someone who could use a special prayer, I would love that. I know I'm not strong enough to go through this every 3 months on my own.

Tuesday, June 21, 2011

a toast

So far summer has been a huge success. There always seems to be a little difficulty in the transition to being home all together, all day. Although I like to think we have a pretty harmonious house, the oldest (10) has lately found it his job to make an argument over anything. Usually I'm up for the challenge. My logic against his. Game on.

But one afternoon it was wearing on me, as he fought with his brothers.

"James. (Insert lecture here). If you keep acting like this, this is going to be a loooong summer."

Glaring at me with defiant eyes, "Well I want this summer to last forever."

Game over. He wins.

Summer forever! What a fun idea!

So here's to a day on the lake, and a night in a tent. To the ice cream truck's song, and the cricket's lullaby. To the mountains smothered in wild flowers, and a baby's face covered in popsicle slime. To a hot afternoon, and a cold drink. To a game on the tramp, and at the ball park. To a picnic lunch, and an evening barbeque. To a long road trip, and a short nap.

Here's to all good things of summer! And to many, many more.

Tuesday, June 14, 2011

kindergarten cosmos

Last night, in the darkness of Luke's room he asked, "Is the future the things that will happen?"


Pause. "And the past is things that have happened?"


Pause. "And so what are the things that are happening right now?"

"That's called the present."

"Oh. The present." Pause. "So in the present you are laying with me in my bed."


Pause. "And in the future you will go away."

I imagined myself getting out of his bed as soon as he got sleepy and crawling into my own. "Yes."

Again a pause. And then in a sweet, matter-of-fact voice, "And in the future you might die."

Pause. "Yes." I didn't feel like arguing the point. And he did say might.

He gave me one his cuddly hugs and sighed.

"Or in the future the sun might blow up."

"Well...probably not."

"It might have already blown up in the past, mom, but we don't know that yet because it takes time for us to see what's happening from far away."

Physics, even at the kindergarten level, just doesn't make much sense to me. I wonder sometimes what kind of sense my kids are making of all these cancer events.

I hadn't talked prognosis with any of them, just told them of the possibility that the surgery would not make the cancer go away forever. Last month as we talked about my nephew's prognosis James perked right up. "Prognosis? What is that?"

"I guess it's like your chances of making it."

"So, what do they say about yours?"

"Well, about 20% survive 5 years."

"Oh, that's good! We can look on the bright side of that!" But his eyes started to blink quickly, and he turned away. Even a 4th grader (maybe especially a 4th grader) knows what 20% looks like.

I wonder how all this will look years from now when the present is the past and we are seeing what happened from far away. It should clear things up. Unless of course, it blows us up.

Thursday, June 2, 2011

about that prayer....

Bargaining is such a fascinating part of the grieving process. Four years ago I pleaded, Please Heavenly Father, I just need to get Luke to school. I won't complain, I won't expect any more. I just need them to be independent enough so that Josh can take care of them on his own.

It sounded like a good thing at the time.

Today felt a lot like the first day of kindergarten. Witnessing an answered prayer. Full of emotions. Full of gratitude.

So, let me set this video up. Luke loves a good joke. Especially if it's his. I see a little of my Grandpa Johnson in him when he throws his head back to laugh at his own witticisms. These last few weeks I have been trying to get out of him what songs he was singing for Kindergarten graduation program. He would not tell.

Josh recently went to Minneapolis and Luke asked me "Is he going to see the Lakes of Minnesota?"
"Oh! That's it! You are singing Proud to be an American!"
"No. Not that one."
A couple weeks ago Josh and I went to San Antonio and Luke asked, "Are you going to cross the plains of Texas?"
"See! That's one of your songs for sure!"
"No mom. Really."
So I started bugging him by breaking out into the chorus changing some of the words. He would insist he heard it somewhere and I was getting it wrong. Last night as I was putting him to bed, he couldn't take my version anymore and sang me the whole song, loud and beautiful. I have never been more proud to be an American.
"But how did you learn that song Luke?"
"Oh, Sam taught me."
"Because I was thinking that would be such a good choice for your graduation. Wouldn't that be the perfect song?"
"It would be. Too bad it's not."
"Don't you think a hundred kindergarteners singing that song would be just what a graduation needs?"
"Yes, but they won't sing it. I don't know why. It would have been awesome."

He kept a straight face, but there was mischief around the mouth.

Well, here it is. I am too busy putting on my best "you got me!" face to keep the camera still. Every time he thinks of the great trick he pulled off he catches my eye and smiles.

I've cut out the middle, but the whole thing was adorable (even cuter in the higher resolution you can adjust on the screen).

And because July is right around the corner, I am finding myself in negotiations again.

And Dear Heavenly Father,

Have I got a deal for You....

Wednesday, May 25, 2011


"You have cancer." And just like that you are drafted into a conflict you would never sign up for. Women and children and old men, everyone is eligible.

In the trenches we suddenly find ourselves. The cancer hospital. Waiting for a blood draw on a bench with worn-out people in same boat. Everyone has a story in their eyes.

We are a brave bunch. Even if it's because we have to be, we are.

We go into treatments the picture of health. Come out disfigured and close to death.

Everyone wants to help, the army of support, but we are the ones who have to stand up and take the blows. Dr.s give us their best weapons and we hope they work.

Then enemy is terrible. Win or loose, we fight hard. For the worthy cause of more time on this beautiful earth. For every happiness we have experienced. For everything we haven't done yet. We fight for the things we love. For the people we love.

Right now on the front lines stands my nephew, Steven. Monday the pathology report from his tumor came back. It was good news! 91% of the tumor had responded to the chemo. The amputation surgery that was just performed should take care of the rest of the tumor. Now Steven has 20 more weeks (instead of the 30 that he would have had with less of a response) of chemo left to get rid of any remaining cells in the body. His prognosis is significantly higher, as we know the chemo is working. I know that he isn't out of the water yet, and there is going to be a long recovery, and many more hospital visits. But I feel like we just won a small battle in a big fight. Go Steven!

oh, and

I really need to update more, so you don't read into the last post that I am struggling. I am doing so good. 100%, really. Running even. And finding other unimportant things to keep myself busy with. I tried one day to just watch and wait. But that was really boring. No thanks.

Monday, May 16, 2011

the middle of may i

A Mary Engelbreit illustration I just saw and smiled at

Last week I had my last Doctor's appointment until July. They just let me go. I walked right on out. All by myself. Okay! Bye guys! See you then! I guess I'll know...ummm...

What? What exactly an I supposed to do?

When I was given the clean bill of health in September I was ready to start my next adventure. I wanted to get involved in something, maybe volunteer at the cancer center, or start taking pictures again, or move out of the state, or go back to school. Everything sounded fun. But nothing felt right. Something inside said 'Just wait.'

Crazy. It is so obvious now why I kept hearing that. what? Do we follow through with long term plans? That was about to include moving from our starter home. Why do that if we end up fighting this thing again and I need my neighborhood (best ever) and my kids need their friends? We wanted to move before James hits middle school. Do I uproot them now?

And guess what I wished for in January as I blew out the candles on my 32nd birthday cake? More life. Not more for me (I was sure I had that), I wanted more kids! Online that night, after Josh was asleep, I filled out and sent an application to adopt four kids from the state. I wanted all of them. I woke Josh up with questions about what kind of vehicle we could fit everyone into and how soon we could purchase it. I was so excited! My first thought when I got the phone call that cancer was back, was that this would be the end of my more kids dreams. Ouch!

I could go to school this fall, or take classes at least. But would this be a waist of time? A job that takes me away from my kids, even for a couple hours a week? Is it worth it?

And then if I just have fun and do whatever I want (what I'm leaning toward), am I distracting myself from reality, or focusing on it?

I know I have to live with no regrets, now more than ever. The question is, what would I regret spending my time and efforts doing?

Maybe one of my biggest regrets is just not enjoying the stages of my life, I mean really enjoy. Too worried about what people thought to enjoy High School, too stressed out about grades to enjoy college, too much anxiety over every hazard to enjoy my babies.

Wouldn't it be sad if I was too worried about something that might happen to enjoy everything that actually is happening?

And so, I try to enjoy this stage, as uncertain as it is. There are hundreds of really great things about right now. There are hundreds of questions too.

With some of my big plans put on hold, I am trusting God sees the bigger plan. But if I could just get a glimpse!

Sunday, May 8, 2011

mother's day madness

Funny how on Mother's Day, I just want a break from being one. Josh has been out of town all week, and has been working long hours lately. So although I heart being a mommy, it's lovely to have a little break every now and then.

Saturday I took the boys to see the new documentary African Cats. I used to never cry at movies. But now all it takes is a birthday card at Target to get me started. Pathetic!

These cats though! What a great illustration of a mother's love. Their instinct to protect their babies from harm is fascinating. The same thing is inside me, so strong.

Of course I would be sadder than anything to leave this beautiful earth, but the thought of leaving my dependent boys is the one I can't cope with.

And that is the trick when a mom has cancer. Mothers wipe away tears, not create them. It is exactly opposite of our intentions.

We do everything we can to avoid giving our kids 'issues'. Potty train them at the perfect age. Talk about food in just the right way. React just so when they get hurt. Strike the right balance between work and play. Intervene just enough during fights. Give them the right amount. Keep our expectations at the right level. Etc, etc. And even though we aren't perfect at these things, dang it, we give it our best.

Give them issues? I've really got the potential to now. Die before they are old enough to make it on their own. Yuck, yuck, yuck.

As I watched the cats care for their cubs, I thought about my sister. Which is a whole different circle of thoughts that is hard to get out of. This week they will remove part her son's leg as a step in his cancer treatment. Really? Cancer in your child? How do you wrap your heart around that one?


I want to stay up all night, perfectly still, and waiting in the grass, and plan my perfect attack, and execute. I want to chase you down, and roar and hiss, and claw, and rip whatever keeps you alive out, with my own canines, and drink your blood in one furious gulp. Cause guess what? You are in my territory. And there are kids in the burrow behind me. And every instinct of movement I was born with is perfected by knowing they are there. And every muscle I have moves for your death. I don't care how big or small you are, I hunt and wrestle you to the ground. Strew your best parts all over the grasses, and eat them before they get cold.


A mother's love is desperate, and powerful, and perfect. It motivates me everyday to be strong. There is nothing I wouldn't do for my boys. And right now they need a mom who wakes up with a smile on her face, and gets them off the school, and reads with them, and cleans their clothes, and makes their dinner, and remembers their homework, and drives them to scouts, and laughs at their jokes.

But this is easy, I want a fight. ROARRRR!!!!

Sunday, May 1, 2011

amen baby

Feeling super good. I can walk, touch my toes, stay on my feet all day. Today I rode my bike to the park. And the wind was in my ears! Sun on my cheeks! Happiness!

We are pretty much back to the normal routine. Which doesn't feel that normal. I am not saying it's a bad thing. I am just saying. Still the same alarm. The same breakfast. Same carpool. Same shirts in the washer, out the dryer. Same legos on the floor. Same homework. Same practice. Same bedtime routines.

Different...Atmosphere? Background music? Perspective?

Same characters. Same setting. It's the plot that changed I guess.

Different prayers for sure. Tonight my 5 year old prayed, "Bless everyone that has cancer or anything like that." Pause. "And help us so we don't, like, die."

Monday, April 25, 2011

just keep swimming. just keep swimming

There are a hundred things to say, but with only a few minutes tonight dedicated to the blog... Thought I needed to update and make sure everyone knows I'm okay. The last post may have been a bit of a downer.

Things are looking good. Other than keeping my leg up at night, I am able to do just about anything. The only thing I am having a hard time with is sitting for a long time, and that will be taken care of when I can wear my compression stocking again. All the sutures and staples will come out tomorrow and I will only have steri strips left. Yes! I put some boots with heels on this weekend for a date and walked with no limp! I am sure the limp is a nerve thing that I just need to figure out.

This journey is often described as a roller coaster. My nephew Steven was quick to point out some major differences. But I think it's pretty accurate. The best imagery I can think of is John Lennon's lyrics, "pools of sorrow, waves of joy." Sadness and happiness at the same time, over the same things.

But see now I sound gloomy again. I really am doing great. I feel like I should be depressed, but I'm not. Who knows what a year of 'watch and wait' is going to do to the psyche. But for now I'm fine. Happy, even.

A small miracle. One of many.

Wednesday, April 20, 2011

longest post ever. needs editing.

Well, just as I was afraid of. Luckily I was prepared. Dr. says they discussed all the immunotherapies, radiation, and clinical trials. They think the best is just watch and wait. Scan again in July.

Well, there you go. One of my what if's: I won't be sick this summer.

Here goes my months of research into one brief (maybe not) post. I am actually going to use statistics from one paper that looked at stage lll melanoma patients that had recurrences (cancer came back after initial treatment). They looked at patients at Sloan-Kettering Memorial Cancer Center for 12 years. Published in 2010. The data seems consistent to the other studies I've been looking at.

At stage IIIc (me), chances of this cancer not coming back in 5 years is 11%. In the unlucky 89%, over half see the disease again within a year. The other half almost all will see it within 2 years.

They estimate 5-year survival for someone who relapses at a stage IIIb to be 20% (that would be me, now as I was a IIIb and had a relapse). If you relapse at a stage IIIc, your 5 year survival shrinks to 11% (don't want that to be me, ever).

And we aren't going to do anything about it? Not really. I did have it removed, which could provide a cure (in 11%). I have already done the one treatment approved for my stage (interferon, 3 years ago). It is supposed to help about 10% of the patients who take it. I think it did it's job for me, as I should have seen this years before it came back. But yes, they do not think I should do any thing other than scans and 'close observation' for now. Melanoma is very resistant to traditional chemotherapy and radiation.

We do have some things, but not many, and they are so toxic, why not wait till we need them? Asks the Dr.s.

I have 2 major options to try if it returns. One is the biochemotherapy (an immunotherapy plus chemotherapy). It helps about 15% of those who take it, cures about 6%. You can tell you are a responder if you have tumors to watch. If you don't respond you get off it and try something else. It is a very hard and toxic treatment. If this helped in earlier stages I think that it would be something they did, but it's kind of like you are either a responder or not. Whether you respond now or later shouldn't matter. As my Dr. put it 'you don't want this stuff, it makes you sick as a dog, and you don't even know if it's helping.' There are a few places around the country who do this with stage III patients, but they are not the big, most respected cancer centers. And I totally see their point in not offering it to me now. But you know how I would just do anything that might help. If they were offering this as an option I would do it in a heartbeat. This is why I'm sort of glad they are not giving me options. I would choose to give up my perfect health right now (minus a limp) and puke in a hospital room for 5 days, come home to recover for a week and half, back to the hospital 4 more times. All for maybe nothing.

The Yervoy I blogged about would be the other drug. This is reporting to 'cure' 10% of the patients. Severe to fatal side effects in 12% of patients. They are studying this drug on stage III patients right now, so we will see what those results are. I don't qualify for that trial because I have been treated with interferon before. If I turn stage IV this would of course be tried, and then again, I either am a responder or I'm not. Scans would show if this is working, and if it does they can keep giving it to you, unlike biochemotherapy where if you fail you are done.

There is another drug on clinical trail, the BRAF inhibitors that are having great success (but they are having a hard time keeping long term responses). As I read on my type of melanoma (spizoid-type), it is unlikely that I have the mutation you need to have this be effective. This was a depressing discovery.

There are always new treatments through trials. In a year the vaccine I was hoping to get might be approved. They are thinking a combination of the new drugs might be the answer, so there are many things in the works.

I admire people who can look at this and say 'Don't look at statistics! Your not a statistic!' Shoot, I don't know how to ignore them! They have my full attention. I do believe I could be on the good side of the statistics. But there is that other side that is so much bigger. 'They' also say 'We could all get killed in a car accident today!' But you would never get in that car if you had a 20% chance of getting there alive. I think even 'you' would be paying attention to those statistics, if 80% of everyone who drove ended up pancakes. Pretty sure we would be walking.

People are startled by the way I talk about it. But that's the way I feel about it. I am so sorry, I don't know why God would give this kind of disease to someone who is so realistic. Who believes science (except physics). Who has seen good people die of bad diseases. Who's faith I guess is not perfect.

And yet somehow I am full of hope.

Hope is just a little different around here. It is evolving. Maybe into what it should be.

I hope that I am cured. I hope that this never comes back. I hope that I am done with this trial forever.

But that isn't enough. I have to hope that no matter what happens, God will take care of things. That in the end, everything will be okay, no matter what the outcome.

I have to add that to the things to hope for, because I will probably not live as long, or have as healthy of a life as I want. I hope not. I pray not. But I can't say I will not, because chances are....


For months now I have not been able to enjoy a novel (until this week). I have been reading medical journals. I just don't have the attention span for anything else, even full-length movies. But I have loved my poetry books I can pull out when I need to get away from the computer screen.

Emily Dickinson I am really enjoying. One of me favorites (it even uses the word extremity):

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

Tuesday, April 19, 2011


The Doctors agree: Watch and wait.

No chemo. No radiation. No trials. No choice (this is a relief).

Tomorrow I will write up a little of why this was the decision. And what exactly we are watching and waiting for...

Friday, April 15, 2011

take a picture of your life. remember what it looks like, before it all changes.

This is the fam April 2010 during Spring Break. The boys came to snuggle in the morning and Josh and I were thrilled to still be in bed at 8. I had to have a picture of how good it feels to be sandwiched between all those sleepy bodies.

Have you heard that quote before? I don't know why I keep thinking "A year ago...." I guess because things can change so fast. And maybe, if they can change for the worse, then they can change for the better?

It's been a pretty low-key spring break, but thanks to grandmas and the neighborhood gang, the kids had a great time. I spent a good portion studying biochemotherapy, which is what I'm hoping I can get after I heal. I don't know, I see why they wouldn't do it yet. But I can't help wanting to do something. I see the Dr. Tuesday for more staple removal and discussion.

Drain was pulled yesterday and I walked around Target today with no problems. Crazy how much improvement there is every day.

Awesome body that can heal itself so well, kill the dang cancer while you're at it please!

Monday, April 11, 2011


The Dr. appointment today was less than exciting. He said he will talk to the board this Thursday about me. He said my leg is healing up great, and that I should get the drain out this week.

Today's mantra was "I surrender to Hope." I don't really know what this means, but it sounded right this morning when I opened my window to purple bulbs, next to green grass, in front of snow-covered mountains, under a clear blue sky, holding a bright yellow sun. And in the background the singing of birds, and the echos of kids. Spring at last! And all It's influence!

I believe I have purple hair here and semi-symmetrical legs.

Last night my five year old asked if they cut my cancer out all the way. "They got all they could find. They just worry because it might come back." "I think it willn't come back." "Willn't?" "That is a word you make when you put together 'will' and 'not'."

Iloveyoulukemorethananythingeverintheworld. That is the word you make when you put together what I feel every time I look into those dang cute, dark brown eyes.

If will has anything to do with this....

Sunday, April 10, 2011

cancer is not pretty

I'm reminded of this every time I look down. This isn't even half of it. Sure glad I got over having gorgeous legs last time around, cause this incision just keeps on going. Up to my hip. I know my nurse friends will appreciate this photo. Note drain sticking out of nowhere sucking up blood. And large suture (there is another further up) holding the dang thing together, otherwise they say it is so long the staples would pop right open. Yuck.

I have very little pain right now, and some more nerves must have been cut as I have no feeling in the knee, and I wonder if that is why I am limping. I am not even taking Tylenol as regularly as I should be. I am just supposed to keep it elevated as much as I can to keep the swelling down.

I told my 5 year old he was going to have to wash his hair all by himself in the bathtub the other night because I couldn't bend down to help him. He looked at my legs. "Do you have cancer in your other leg?" "No." "Well, then you can just hop on that leg to the bathroom and bend down with your cancer leg strait in the air." This is something I hadn't considered. I guess I have no excuses.

Cancer survivors usually have to live with some sort of after effects from their treatments. I developed lymphedema in my leg from my last surgery. It is essentially chronic swelling caused by surgical excision of, or radiation to, lymph nodes. It is found mostly in breast cancer patients in their arms. I was so devastated when I was diagnosed. Don't google it-the pictures are terrifying. I have taken very good care of it, wearing a compression stocking every day, wrapping it with bandages occasionally, and exercising. I really had it under control. You would never know. I always wear pants and long skirts. It was a hard adjustment. But I made it.

I talked with a girl who had cancer in her leg as a teenager. She is unable to pick up her leg (like to climb a stair) from her surgeries, and walks with a slight limp. I really enjoyed our conversation. She understands what it feels like to be told "it's a small price to pay for your life!" Which is true, so true. But sometimes that price seems big. After all, it is a part of you. And it's forever. Suddenly you are different. Different than everyone else, different than you were. Even if it's just the ability to wear capris, high heels, or go around bare feet. You still grieve the loss of how things were. And for a lot of us, how things looked.

But trust me, right now I do not care how things look. My vanity burned up long ago. I just need this leg to heal!

Loved the scripture I read this week saying He shall arise "with healing in his wings." I wouldn't mind some sort of swoopage down right about now.

Wednesday, April 6, 2011

lucky me

They didn't find cancer anywhere else. Great news! The Dr. is recommending just watch and wait. He will take my case to 'the board' with the oncologists and other melanoma surgeons and let me know Monday what they say.

I know it is not likely this thing is cured by surgery.

So I go over the What Ifs all the time. Most of them depressing. Everything that comes along with What If I die.

But I keep coming back to What If I live? What If I feel good this summer? What if I don't have cancer? What If I get to go everywhere I always wanted to go? What if life just gets better? What If I get to be anything I choose to be? What if I get to send my kids to college? What If I get the be an old lady? What If I live so long spring gets old?

Are those the possibilities everyone wakes up with? Lucky everyone! Lucky me that I even have a chance at that. Wow.

Tuesday, April 5, 2011

i've come to my senses

Turns out I don't even need Lortab (so far). I am walking around just fine. They cut a nerve during surgery 4 years ago, and I haven't had feeling in the thigh since, so I'm sure that's helping. And they didn't mess with a muscle (they had to move one last time to cover up my artery). Anyhow, I am feeling great.

The Dr. said he had a pathologist looking at the tissue he was cutting out to make sure they got it all, and assured us we had clear margins. He said the tumor was hard to find, even after he had taken it out in a large chunk. I was pretty happy about that.

As he was cutting on some of the old scar tissue, he could tell the scar tissue wasn't getting any blood supply, so he went ahead and cut out the entire foot-long scar above the tumors. Just thought I would share some of these lovely images. And all my good news. Thanks for your thoughts and prayers, they seem to have really paid off. I am in great spirits.

Tomorrow afternoon we will see what the pathologist had to say. My guess is that if they only see cancer in the tumors, the Dr. will say we just do what they call 'watch and wait.' Scan every 3 months and see if I am a lucky one who has it taken care of by surgery. If it is in the nodes or leaking out of the tumors they might recommend some other type of treatment. I am finally informed enough (3 hours a day on the computer researching melanoma) to think that maybe watch and wait would be okay. It is not my first choice, but that is the standard of care. The problem I'm having is that the standard of care is not having great success. They think wait to use the toxic treatments until I need them (stage IV). And hope I don't need them.


I am out of surgery. The incision was bigger than planned. I came home with a drain in my leg :(

I will go see the doctor tomorrow and should have results then.

I am grounded from blogging on loritab.

Sunday, April 3, 2011

back to the drawing board

Kind of left this on a bad note. Things got better, and I had a lovely weekend. Lots of nerves today while waiting for this afternoon's randomization. Nurse just called. I got put on the GMCSF arm (the one I didn't want)! A bit bummed, I really thought I would be doing the vaccine. Only 1/3 of the people get the GMCSF, but I'm good at beating odds. I knew I would drop out the trial if this was the arm I was put on.

So. Surgery on Tuesday. Stoked about that. Now to find something I qualify for after to take care of any cancer cells floating around....

Thursday, March 31, 2011

my better (or worse) half

Thanks to Josh for saving the day! The only person I wanted to talk to yesterday came home early and dropped by the flower shop on his way. The lady asked what it was for as she tried to help him decide what to put in the boquet. "Is it for a birthday?" "No..." "Anniversary?" "Nope..." Awkward silence. "Just a bad day, I guess." "Oh, I get it." She probably thought she was making up something for an unfaithful husband as he tries to make amends.

Josh won't really let me talk to people about how he is doing, so I thought I would write it up for all our friends and any random reader. Kidding. I won't give details. But we have been talking about how this has worked for us this last month. If I am down he automatically kicks in to hopeful/helpful/happy mode, and if he's down I have to be the opposite too. Moods change daily and even hourly, but one of us is usually okay. Lately he has been the okay one (as my last post might suggest).

At first, I was all hope and faith, while he had a harder time. This surprised me, as last diagnosis he was never doubting.

When he was so sad I tried to figure it out. "What is it that is bothering you? Is it the financial aspect of it all? Is it that I will gone for treatments, or sick all the time, and you will have to take care of everything like last time? Is it the possibility of being a single dad? Raising these kids by yourself? Alone every night when the kids are asleep by 9?"

The perfect answer? "No. I'm not worried about any of those things. I can handle all that. It's just the thought of you leaving."

Holy Luck of America, I got a good one!

Wednesday, March 30, 2011

and all the skies are grey today

I just got got a call from the Dr.'s office letting me know I have been approved to take part in the trial. Although I was assured that we would be able to start injections this week, there is no room in the cancer hospital for me until Monday. Monday at 4 is the earliest we can start. They can't do the randomization (to see if I get the vaccine or the other drug) unless I can start injections within 24 hours. So I won't know till Sunday night if I even get to do the vaccine. I have surgery scheduled for Tuesday in case I get chosen to the other arm of the trial.

I have been praying to just get this over with. Prayers, temple, fasting, swearing. None of these are giving me any speed here. I never imagined I would have to wait another weekend! I tried everything today! Bawling over the phone, begging on my knees (I guess they didn't see that), having my cute 5 year old talk a little louder so they might take pitty on this MOTHER. I even sicked Josh on them. Nothing.

Pretty sure I could pull off a STAT trip tonight to Italy, but can't get a bed in a hospital 15 miles away until Monday?

I realize the perfect situation would have been a faster approach. But second opinions seem always to be a good idea. It takes a week to get into anyone, and then they tell you to go to someone else, etc. Scans take a week to get scheduled for. Then we find things on them, then I change my mind. Days turn into weeks, and weeks into months. I asked one surgeon to just take the dang thing out and then we can decide what to do, and he said don't take it out without a plan. I was refurred to MD Anderson by a dertmatologist, they called and said 2 weeks until the appointment, and then you have to have the workups etc. We would be looking at 3 weeks out to get into anything down there.

Obviously if there were a clear cut, great option, I would be well into that. With such poor response rates to current treatment, it is not all black and white.

It could be worse. I didn't have a dermatologist appointment until 2 weeks later than the day I had the first metastasis removed. Thank you to my endocrinologist!! I would have no idea this thing was going on inside if I wouldn't have had that little spot growing on my leg. Thank you small wart-like lesion! I can feel the tumor in my leg if I press really hard on just the right spot. I would never come up with that if I didn't know where to look. And I was NOT looking for cancer. I was cured, remember?

Look, if this cancer is inclined to stay in the leg, it will do just that for a while. If it has decided to break loose, it is probably in the system. I am putting my life in the hands of this Dr. and I don't need to be told things are going too slowly, because trust me, I know. I want this thing resolved pretty bad. I have to wake up to this nightmare every morning. And all I've had to battle this Beast is asparagus and berries?!! Worst weapons ever!!!

This has taken every ounce of strength of mind I have. And I am running out.

When you come over to talk to me about it I may ask you to cut the dang things out with my bread knife. I will tell you this situation is driving me crazy and I can't believe I'm not is some cancer ward puking my guts out. But please don't diss my Dr., because that will not help me heal. Let that anxiety be mine. It's kind of like how you can complain about your mom, but no body else can. (Not you, mom). I am putting my life in this guys' hands. All the opinions pointed to this Dr., and no one would be happy unless I was in his care. Well, this is what he is telling me to do. He is the best out there and I really like him. I have to trust him.

Sorry to ramble. I feel like hiding under my sheets and never coming out. I'm sorry I'm not answering the phone or door today, I can't take it. I suppose I'm in the depths of despair. Plus I'm angry. Two horrible feelings.

Sunday, March 27, 2011

run, peter, run!

My sister and I remember a story we heard as teenagers about someone who had cancer and would imagine his/her T cells attacking the cancer cells one by one, I believe with an ax.

My guided imagery? The cancer cells are weeds and I am the gardener. On my knees, bent over, uprooting every little unwanted bit of green out of the immaculate bed I am keeping. Armed with spade and hoe. Round Up and Diligence. Checking my rows again and again for anything that is not meant to be there. Looking over my freshly turned earth at the end of the day with satisfaction. Wiping a bead of sweat under my wide-brimmed hat.

Now that I realize I am going to have to fight this thing using my immune system, the Garden Warrior is obviously weak-sauce. No hard drugs to come in and kill this thing, just some help to get my own system to attack. I have to get it from the inside out. I need a stronger superhero. Someone a bit more intimidating than Mr. McGregor. Hmmm...

I am excited to see what they are going to tell me about the FDA approval of Yervoy. I think it sets up the perfect plan for me. Get the vaccine injections, which are supposed to get the virus into the cancer cells, telling the immune system to attack it and the cancer cell it has invaded. I think I have built a tolerance to melanoma, and my body is no longer recognizing it as foreign. The vaccine should change that. So the body tags all the cancer cells in the body to be killed. I do this for a while, and then get the tumor removed (it will be dead in my case). Then we start the Yervoy, which blocks the cancer's anticancer immune response and all hell breaks loose on anything left inside because those cells are already tagged to die. It never comes back. I am saved forever. The end.

Friday, March 25, 2011


All over the news today: the first drug in like 15 years to get FDA approval for treatment of late stage melanoma. Does this mean something for me? I am finding out. It may only be approved for stage 4 patients.

Exciting day in the melanoma world!

Thursday, March 24, 2011


You might just want to tune in next month to see what I really end up doing. It's changing all the time. The decision has been hard. I have made it, and then something comes up to make me think again.

I've had all this fight and no direction.

No decision is a great one at this point. I had to come to terms with what I'm dealing with here: late stage melanoma. It is what it is, and no one is going to tell me they have a great treatment. I just need something. I am going to give the vaccine a try.

And it's not because it's the easy way out. I'm telling them, "Amputate the dang leg! Pump into my veins the hardest chemo you have! Burn the entire body with radiation! Everything, and all at the same time!" None of this really works though. Different cancers respond to different treatments. Melanoma is not usually cured with any of these things (even amputation, trust me, if it worked they would do it). Some of those things can help, but the things that are working are immunological drugs. Finding a way to get the immune system to kill the cancer.

I should mention, melanoma is very curable if you surgically remove it before it invades other parts of your body. Once it metastasizes, it gets tricky. I'm not in the really tricky category (stage IV). Thank goodness!

This trial injects a modified herpes virus directly into your tumor every two weeks. They use an ultrasound to see where to put it and if it's responding. It replicates in only the cancer cells, killing them and sending off an immune response throughout your body to kill other cancer that may be lingering, or even other tumors far away from the one they are injecting. It's a good idea, but will it work?

The last trial was a Phase II and only had 50 patients enrolled. The results were good. Great for some people. I liked this article, which shows its response rates compared to the 'gold standard' proleukin which is part of biochemotherapy. There is a low response rate to biochemotherapy, but some people are complete responders (according to this article 6%) which means it gets rid of all the disease. For those complete responders they live a median of 5 years. So response rate is low, but is very effective in some people. They are claiming Ovcovex has a higher response rate, and a higher complete response rate.

The Oncovex website is: The results look promising for sure. I am a bit of a skeptic.

There are some things I don't like about the trial. The control arm for one. It's a drug that has been studied in patients who have had their tumors removed. It was found to lengthen time of relapse, not change overall survival. It has not been tested in people with active disease. There is a 1/3 chance I get randomized on this arm and if so I think we go back to surgery. We will know early next week.

This is what the 2 melanoma specialists have said they think is best. They say as soon as we see it's not working or we are uncomfortable with what is happening we drop off and take it out. But what if it works? This could be great.

And so? We inject.

And then? We wait. We pray. We hope. We take nothing for granted. We praise God for all he gives. We celebrate every sunrise. We give reverence to each sunset. We concoct green drinks. We eat salads full of veggies. We don't look back.

And then....we rip those tumors out if they don't respond. And we try something else.

And that is how we do it.