Update Day 2

Alisa felt pretty good yesterday, and was telling the doctors and nurses she wanted to get sick, "its not working if I am not sick, right?"

They tried to explain that is not necessarily true, well she got her wish today. She has been shaking and has thrown up a couple of times today. She has a fever now.

Her sister stopped by to visit, but Alisa was sleeping and groggy the whole time. They tell us she will be feeling a lot better just a couple days after she gets home, that is probably the best time to visit.


Josh

Update day 1

Everything went as planned today. Alisa got her first dose of Il2 around 1:30. She has not had any bad side affects yet. She will start her second dose later tonight.

Worst part of the day - I (josh) almost passed out while they were putting in the picc line.

calling all alisas

Progressing to stage IV was nothing like I envisioned. I have taken my passport with me to every Dr. appointment, just in case. In the event of bad news I was on the first plane to Italy. Josh could go home to pack and meet me there maybe the next day. "Just come and find me on some cobbled street looking out over the sea." I would smile brilliantly in all the photos, like There was no danger. I would chunk up on pizza, come home refreshed and ready for what was next. It was a great plan.

But no. No desire to get in a plane. Only an urgent need to stay put and hold my ground. To go home and be normal for a just a little while longer. To sit at the piano again with James. To finish painting Sam's bedroom wall with him. To take Luke mini golfing at the trashy fun center. What a funny reaction. I never would have guessed.

But tonight has not felt normal. Tonight Sam couldn't sleep because he was scared. "Scared of what, Sam?" "Of everything." After a stirring speech on bravery, to which Sam gave a courageous nod to each point, I softly admitted, "I'm scared too." And then when he fell asleep in my arms I cried like a baby. Cause as careful as I am not to show it, I am scared. Of everything.

I need some help, some source of strength I haven't yet tapped into.

I got an email from my dad tonight reminding me how strong I am. "You seem to have been able to accomplish anything, pass any test and muster uncommon power to do what you have needed to do." Yes, I thought, yes! That is the girl I need to be right now. Everything I have been. I need all of me, right now.

The little barefoot girl that was up for anything, and worried about nothing. I need her now. I also need the teenager that carefully, patiently formed a plan to get josh. Waited for years until he noticed me, and in the mean time, became something he might want. Played my cards just right. I also need the determined college girl. Who could sit still for five hours at a time in a library, settling for nothing below a 95% on all my exams for nursing school. Who walked around campus like she was on top of the world. I need the young mom who has no idea what she has gotten herself into, but plows through just the same. The one who decides she will learn how to cook, and how to balance. The one who decides that she should make a little money, and starts her own business because she can. I need the Alisa that has been down this road before. The one who made it nine months through treatments, and came out of it stronger, happier, and more confident than ever.

And I do need that Alisa in Italy. Her I need maybe the most. But I just need her to stay there, in the the future. She will help just by looking out over the sea. Because I know I will be right there one day. And that will keep me going.

8:00 am tomorrow morning. We show ourselves what we are made of. All of me fights. Together.

game on

Today is the day I started a fight that I must win. All I had to do was hold very still while listening to Cold Play.



I did have to take a pretty hard test. They hooked me up to an EKG and telemetry monitor and gave me some IV dobutamine to make my heart race. It also made it beat very strong. They did an echo-cardiogram before, during, and after they administered the drug to see if the heart was in good enough shape for the rigors of IL2. They thought everything looked really good.



Hospitals used to be such happy places. I kind of had to keep my tears in while listening to and watching my heart beat. I know that sound. Pretty sure they should be aiming this thing at my stomach. And how much fun would it be if they hear not one, but two little hearts beating? And how wonderful it would be to sit in a hospital gown, in a hospital room with Josh, and discuss the fussy things you have to bring up when a new person is about to be brought home. And how Josh would look at me with excitement and pride while I lay on the bed and hurt. And how he would cut the cord and the nurse would lay the beautiful wet thing on my chest and, wow! How I would cry and laugh, and hold the little creature so tight and whisper, "Happy Birthday!"

"Alisa? How are feeling now?" My heart was in the 120s by now and pounding out of my chest like nothing I can relate to. "Oh...It's just...(eyebrows scrunched together)...My heart..."

thank you

Thank you all so much for the emails, calls, and comments. Hopefully I will soon have lots of time at the hospital to reply.

So today we got a treatment plan for radiation. We spent the appointment in a CT scanner marking my leg to get the radiation in the right place. They decided on one high dose day instead of spreading it out. Sounds good to me. As long as we hit the right spot (they assure me they will). They aren't expecting any side effects, and it only takes minutes on the table. We do that tomorrow after my heart and lung tests.

I wanted to share our New Year's letter. We never sent them out. This was written before the cancer had returned. How wonderfully boring life was a month ago. Sigh.

Hi. I’m James and I got stuck with the boring task of writing the family…(my mom just told me it was called a newsletter). And I am also the editor, darn.
Dad-Dad likes to play basketball, and does not like to work on computers because he works on them all day and probably gets bored. He coaches Sam’s basketball team (and I’m the assistant coach). He plays on the ward team and a city league. He is a good leader and takes every opportunity to boss everyone else around on the court. Dad got direct TV and now watches all the cool football games (and the not cool ones too). He has to take Ginger to the park every night and play fetch with her. Of course, she only listens to him and ignores everything I say (except for the words treat and park). Like most grown-ups, he likes to nap instead of doing something else.

Mom-Mom complains about how much work she has to do cleaning around the house for us. She catches a break by running with dad, leaving me to play video games. Mom switches dinner with people (she cooks for three other families on Monday and gets to take a break Tues, Wed, and Thursday) and makes me eat every bite. Mom has cancer so we get to go on trips. Once we went to Hawaii for a vacation. Beautiful place, but the spiders are way too big. Snorkeling was great, we saw some sweet fish. We went on a boat tour and saw whales and spinner dolphins. Luke occasionally talks mom into taking him to Trafalga (local fun center) which is totally NOT her favorite pastime. Mom makes often DI runs and picks up every book she sees.

James-This year I started karate. We learned these sweet moves that I use against dad when we spar. I have a punching bag hanging up in my room. It’s currently on the floor, seeing as I kicked it about half as hard as I could have. I like to mess with legos and hex bugs. I like to shoot my brothers with nerf guns. My mom forces me to play piano. I have to play a grueling 40 minutes a day, 5 days a week. Talk about torture. Mom is really excited about my Beethoven song, which sounds more like a dance.  My mom also forces me to go to school, which is not a fun experience. We have to do like three hours of homework (true story).

Sam-Does the same sports as me and also plays football. He goes to school and hates reading. He has seven girlfriends, and an army of regular friends that come over and mess up my room. He plays the piano and is totally unreasonable about it. When he thinks a note is a G and it is really a C he and mom get in a big fight. He is a nice brother, and takes care of all the animals for us. He is Winton’s (our cat) favorite human and Ginger likes to chew on him like he is a dog. He got a bow and arrow for Christmas and he is a great shot. He is in the middle of painting his room (which looks to me like a bunch of scribbles). His favorite subject in school is lunch.

Luke-Likes to play games. All games. And that about sums him up. Just kidding. He loves sports, but mostly bowling. He has been busy with his T-ball, football, and basketball teams. His favorite subject in school is math. For Christmas he got a bunch of new board games that he is constantly begging us all the play. His real love is video games (which he rarely gets to play). He is always telling us about Chop Chop Caveman and no one has any idea what he is talking about (“you know the jungle, and how there is like the graveyard and stuff, on level 5 you have to be the boss on each one, and the one on the jungle one is Szchuan. And then you go to the graveyard and you have to defeat the 4 levels and then the boss, and the boss is the Wade. And when you kill him, then you get to the swamp……”).

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?