100%

Today I had blocked out as a 100% mom day. Josh was out of town. I had no appointments. Was not even expecting a call from the hospital. And so...we slept in and played hooky. We have been waiting to get out our sleds all winter, and woke to a valley covered in the beautiful powder Utah is know for. We dared each other down the biggest "cliffs" and chased our dog around the untouched snow. We even had a bit of sunshine. We then went to the movies, out to lunch, mini golfing, and played a round of laser tag. Came home and did some homework and organizing of rooms.

These boys just fill me with hope and courage, and every reason I need to stay positive. It's like they have little bits of me in side them, that shine out and remind me of how strong I am, how much I can do, and how much I can believe.

2012-01-24

From 2012-01-24

mom vs cancer

We got the rest of my appointments scheduled this morning. I start radiation on Wednesday. Get my heart and lungs tested on Thursday (to see if they are in good enough condition for the IL2). I start the IL2 on Monday at 8:00 am.

I am going to post my long explanation (the camera stopped recording half-way through, so this is just the IL2 and IPI option) to the kids. The highlights are: Me sitting down like an old lady, being every so careful. Watching this makes me so sad. I think I've been doing this for weeks and thinking nothing of it. James crossing out the cancer in the mom vs. cancer story. Sam writing "Mom Wims" at the beginning of the story, and James making fun of it. Luke asking from the get-go, "Could you die of this?" "Would you have more chance of dying?" Luke altering my smile on the animated version of me.

I really did give a good hope and miracle section at the end that was not recorded. I think I am scared of harming their faith if I say that for sure if we are praying hard enough that we can cure the cancer. I am trying to find a realistic balance. This is all uncharted territory. I don't really know how to handle it, or what the experts say. But the truth is out there. Like I say at the beginning, I don't want them to be surprised no matter what happens. Good or bad. Anything can happen. I think we are all clinging to the good possibilities.

We had a good cry. I did have Josh start to video by then, so I put some slow mo of that in there at the end. It needs some sad music, but I am tired. Where is my professional filming team?

My final point to the kids was, "This is going to be hard. But guess what? We can do hard things."

pain

It has been a long week. Worst ever. I have had a low grade fever ever since Tuesday when we found out (or really, maybe it's been longer, I've never checked). My theory is my immune system is really trying to do something about the recent invasion. Poor baby, it has been fighting this thing for 5 years. We gotta give it some help!

Had the talk with the kids today. I will have to post some of the video. I pride myself on my pep talks. This was a hard one. Not a ton of pep at the end. Lots of tears, lots of fears.

Trying very hard to stay positive. I now have a dull ache constantly in the right ischium. Can't believe how fast it seems to get worse. I was doing yoga until the beginning of the year. No way I could do most of the sitting positions, it hurts even to bend and touch my toes. I was running a week ago, and only noticing pain there when I ran up the stairs. It now smarts when I sit down quickly without taking care to position myself just so. We are totally creeped out by this. Cancer is at the very least right now, a pain the butt.

Thank you for all the offers to help. They really give us a sense of peace. I am working out a schedule right now for the kids and the housekeeping. I cannot believe how many options I have. Both of our families live close. I have 4 sisters a short drive away. A neighborhood full of best friends. The kids will be very well taken care of.

I am a painfully independent person by nature. But a couple of my sister's came by today so desperate to help. I put myself in their shoes and realized that I could actually help their anxiety if I could find them something to do. So I am working on that. It's time to take people up on their offers.

For now, I appreciate all the prayers. Josh and I went to the temple today, and felt lots of love during the prayer. We are doing okay. Nights are hard. Putting the kids to sleep is very difficult. No one wants to make the boys be silent for the rest of the night. I keep capturing any child who wakes up in the middle of the night to pee. He must get in my bed and sleep by my shoulder. I want to hear him breathing and stare at his eyelashes.

Love is heaven, and heartbreak is hell. How are we mixed up in both?

The Plan

So. We had another long meeting. I love that the Dr. Was very confident in his decisions. We are starting Tuesday with radiation of the hip and femur. We will shrink them to prevent major complications and pain. But also, because it kills some of the cells, the immune system will kick in to clean up those areas and potentially increase the body's ability to attack the cancer cells. Then the next week I start IL2. We do one block for 8-10 weeks, then rescan and see if I'm responding. In between rounds I go to Maryland where my dream trial is waiting for me. They surgically remove some of my breast tumors, then start growing the t cells (I will have to explain this later). If the Il2 doesn't work, we switch to IPi, or the braf drugs if things are looking real ugly. We will also have the t cell transfer trials to fall back on. I like the plan. I just need lots of time to carry it out. Or the first thing could just work.

More later.

medicai [sic] opportunity

I forgot to share my fortune from the cookie I got with my birthday dinner.


Do you think God might wink at us in random ways?

I would love a prayer today that we can come up with the best treatment plan available. Josh just watched this video of the well-known (and from what I've read from his patients, well-loved) Dr. Weber explaining the treatments I mentioned yesterday and some of the new clinical trials. Very well said. And very hopeful.

http://medical.melanomaonline.info/blog-news/dr-tony-talebi-discusses-the-treatment-of-stage-4-melanoma-with-dr-jeff-weber/?utm_medium=twitter&utm_source=twitterfeed

I kind of hated it when the nurses or Dr.s last year would make comments like "This is a great time to be in melanoma! So many exciting things are happening right now!" Never is it a great time to be in melanoma as a patient, but it is better than it's ever been. And it is a little exciting.

the oncologist

Sorry this is late, I am just sitting down for the first time today.

I have a major headache. But it's not because of brain mets! Brain MRI came back negative! Didn't want brain surgery anyway.

The appointment went well. I guess. I love my Dr. and Nurse Practitioner. We might have started the meeting with a hug. I am sure giving out news like this is not a fun part of their job.

It is going to be hard to summarize an hour long meeting, but here goes...

They showed me where all my tumors are. I guess there are like 10ish. Kind of spread out. Have I had any symptoms? They ask. Now that you show me that large tumor on my right ichium (sitting bone) I have been telling Josh that ever since I worked up to running 5 miles (I am/was training for a half marathon in March) that my glutes (not sure on the spelling here) have been awful sore like they've never been. I thought I was giving them a good workout. So sore that I have had to shift my weight to my left side when I sit Indian style. And I guess I had a hard time driving last weekend to Pocatello, but I blamed it on Josh's car's uncomfortable seat. Wasn't considering a bone tumor!

And then there was this lump in my breast that appeared one day overnight a few weeks ago. I scheduled a mamogram for this coming Monday, but the PET scan showed there were several metastasis in both breasts (didn't even count these ones). The Dr.s felt them and immediately said there was no need for a mammogram, this was melanoma.

You would think with my history I would clue into things like pain and lumps.

Anyway....we got my bloodwork back and my LDH level is high (meaning there is breakdown of good cells going on). This is not the best, it puts you at a bit of a more advanced stage 4. I'm not really on the good side of stage 4, as I have liver and bone mets. Patients with cancer in the lung or subcutaneous tissues have a slightly better prognosis. So that's not my favorite.

Here are the survival rates for stage 4. They were done in 2009, and we now have 2 new drugs and a lots of new clinical trials, so they are not up to date. Still...



Pretty much I'm yellow on both charts. And no, the Dr.s do not bring up these charts in your appointment. They sent this to me when I was stage 3 (I am just showing the stage 4 part here). I am nurse, what can I say? I like the data. I would go crazy not knowing this kind of thing. Just my way of dealing with it I guess.

So, the big question. What about the drugs??? We have three options. BRAF drugs, I talked about these in an earlier post. I want to use this when I need it (symptomatic). Not a cure, but works quickly and on lots of the patients. You take it home in a pill bottle. Very cool.

IPI, this is the drug approved last year. Not a chemotherapy, easy on the body, cure rate of 10%. I was worried about the side effects, but they said their patients have done pretty well on it. This is given once a week as an IV infusion, and doesn't require nights in the hospital. There are lots of people who respond months after they begin.

And then we have IL2. Given in an ICU setting for 5 days at a time for 4 rounds. Chemotherapy plus major immunotherapy. Makes you sicker than a dog, lots of potential complications, but usually they are temporary and treatable. Cure rates 6-4%.

I think I went in hoping the IL2 would be first choice. I have read lots of articles, but really I'm just thinking logically here. Not everyone gets to do IL2. You have to be pretty healthy. Why not start there before I get sick? Then we do IPI.

There really are no answers on what order to try IPI and IL2 because IPI is so new. This Dr. says the argument of trying the IL2 while your healthy is a valid one. But because of the better response rates and easier treatment, he would say IPI first. He does not administer the IL2, so I am going tomorrow afternoon to meet with the oncologist that does. This other oncologist also knows about the trials there are around the country (it seems like the ones I'm interested in require that you have failed a stage 4 treatment), and knows his IL2 really well.

So. Tomorrow we will decide. Really, they said there is not a bad choice here. They think I will have time to do both. Either one they say I could start soon.

So I'm either going to be walking around just fine, or stuck in the ICU for the next little while. I'm good with either. Just anxious to start proving my total awesomeness (this I say like my 10 year old son)!

p.s. Did I even cry? Only to the male nurse whom I adore. And only just a little.

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?