how this is going down

Starting today.

Listen close, cancer. 

My T cells, they know what to do.  They proved their awesomeness.  We have spent the last four months training the immune system with IL-2.  Training the right cells to pick up your scent.  And destroy.

We let them have a taste of you.  We let them eat tumors whole.  Large ones.  In one week.  Gone.  All gone. 

You took advantage when we quit the IL-2.  But don't assume it's your advantage now. 

Cause guess what?  We have been holding back the attack cells this whole time.  Ha!  Today we introduced into the body Ipilimumab. 

You see, we all have brakes on our immune systems to prevent autoimmune diseases:  We only let our T cells go so far.

IPI is a molecule that takes those breaks off.  Lets the T cells work without the normal restrictions.  

That is what we injected into the veins this afternoon. 

We are so coming after you. 

With the ferocious T cells off of their leashes.

Ready boys? 

SIC 'EM!! 
 



p.s. and tonight we add a chemo pill to start your pain.  It is so deadly I have to wear gloves to touch it.  But I'm swallowing it and sending it straight to you.  Gulp!

p.p.s.  if you ever, you know, want to surrender, I'm totally cool with that.  Totally. 

through the years

I opened up  my old blog on my last post. 

There are a ton of things I would like to edit.  But I am leaving it original, because that is who I was back then.  It's good to see a change I guess.  

*I was worried sick about the lymphedema in my leg!  I am so over it now.  The swelling has been very manageable.  I also can't believe surgery stressed me out.  Ha!  I love surgery!

*I got a lot of things medically wrong on my first diagnosis.  I am sure I am still giving misinformation here, I am just saying it how I understand it now. 

This section is especially for my melanoma friends who will know the terms I'm using here.  I didn't ask to see the pathology report from the original mole that was removed.  Which is totally ridiculous of me.  If only I had gone on google and typed in the word 'melanoma' I may have figured out what to be worried about.  But, last year I read the report. The biopsy was sent to 4 or 5 pathologists around the state before the final report was written.  One line reads, "These are some of the strangest melanocytes I have every seen."  Not super reassuring.  It recommended only having USCF unravel the DNA to see if it was melanoma.  The report didn't have a depth associated with it (the UCSF report did, it was at least 2.5mm).  It was also a shave biopsy (note to everyone who is having suspicious moles removed, insist on a punch biopsy so if it turns out to be melanoma they can see the depth and get your stage right).   The UCSF report said "Thank you for sending this interesting specimen..."  I thought I had nodular melanoma, because that is the closest thing I could find to what my mole looked like when I searched for images (it was pinkish and tall, it grew in a couple of months, I thought it was a wart), but I later found out it is under the microscope that they determine what kind of melanoma you have, and mine was a spitziod melanoma.  I assumed my dermatologist was in the wrong for not acting quicker to get a node biopsy.  I realized after reading the reports, he was only doing what was recommended.  At a depth of 2.5mm it likely had already spread to the lymph nodes.  Of course I would have demanded being super aggressive at first, if I would have known how horrible the cancer is.  But I don't think anyone was at fault.  They were very odd cells.  From my reading, determining between a benign Spitz nevi and a spitzoid melanoma is very hard.  The Dr.s have also told me this was unlikely caused by sun damage, because of the type it was.  I have my doubts, but there you go.  I need to do some more research on spitzoid melanoma for sure.

*I loved my life with little kids at home.  I wish I would have written down more of what they said, and what we did.  I am starting to record what I remember of them since they were babies.  I will hopefully finish with that this week while they are at a karate camp in the mornings.  But my memory of those days is so limited.  I wish I had kept a better record. 

*The old blog plus this one does not represent how my life since 2007 has been, really.  I stopped blogging in 2009 and every time I thought about starting back up again, I thought I would only be bragging.  Josh keeps telling me, "We have had the best few years of our lives."  And they have been.  Full of adventure and love and hope and appreciation.  Our marriage had never been so perfect.  Our children were not old enough to be too cool for us.  We were surrounded by good people that we love.  Josh loved his job.  I loved my life at home.  We had cancer behind us, and nothing ahead to slow us down. 

Those two years in between my blogs will always be remembered as our favorites.  Too bad I didn't keep better record.  I could have kept a private blog to brag on, couldn't I have?  Anyway, I just wanted to make it clear that I have not been sick and worried for 5 years. 

*Some posts that might summarize the blog:  we learn that my mole was indeed melanoma, hearing the bad news that the cancer has spread, treatment plan, how I felt during treatments, one of those chemo days, the boys take advantage of my weak mental state and acquire a puppy, an all time favorite song, the end

grounded

The Doctor eased into the bad news a little better than I did for you here.  He was professional and kind when telling us what were up against, and what we were going to do about it.

IL-2 produced some pretty amazing results, I don't think any tumor that was there at first (in January when if popped up everywhere) is anywhere to be seen.  Nothing on the bones is 'lighting up' on the scans, and the liver spots are almost not there.  Strangely, there is really nothing new in any of the organs, except the most important one.

It has been 4 weeks since I did IL-2, the washout period you need to get into a clinical trial.  I was really hoping that I would have those options.  Brain mets (I will be using that term lots, short for metastasis) in this quantity pretty much disqualify you for anything.  Our goal is the get them stable (prove they aren't growing) so we can qualify for a trial down the line.

To do this we are going to start early next week with IPI (Yervoy) and Temodar.  Temodar is a chemotherapy that has the ability to cross the blood brain barrier.  It may (I don't know the odds here, 20%) help keep the tumors under control while we wait for the IPI to kick in.  IPI normally takes 12 weeks to work (I'm not an expert this is just what I am piecing together).  From what I have read, the median survival after being diagnosed with brain mets is 3 months.  Yeah, not so great math.  And usually you are talking a few brain mets, I don't know the statistics on 25.  The temodar effects only last a short time, but maybe enough to give time for the IPI to start working.  We are hopeful that because I had an immune response to the IL-2, that I will have another with IPI.  IPI does not cross the blood brain barrier, but if you can get your immune system to go after melanoma, the T cells that attack can get to the brain. 

Braf drugs.  Would be an option right now, but while the mets are so small, and we know my body can fight the cancer, we are waiting till the last minute for that one.  I would rather do treatments that have a lasting effect (IPI) while I can.  The Doctor thinks the Braf drugs work in about 40% of brain met patients.  So there is not even a guarantee there.

I was strong during the explanation.  Mostly I was shocked.  Really, I never thought it would be this bad, this fast.  I started crying only when I asked about driving.  Seizures are a common symptom of a brain tumor (although he thinks I won't have symptoms yet, with tumors this small).  He recommends I do not drive until we get this under control.  If I were to seize while driving I could do harm to those I was driving, and those in my path. 

Yup, I'm grounded.  For life, really.  And that is the what made me cry.  Not the 25 tumor in my brain part, or the probabilities part.  Not when they pulled my PET scan up and showed me all the little places around my body the cancer was hiding, or the side effects of the drugs part.  Not even when I realized that this is such a long shot.

Just when they took away a little freedom.

I am a pretty spontaneous person.  I don't love to plan.  My favorite mornings are always when I wake up and get an email from google calendar that says "you have no events scheduled today."  I don't like to plan a trip, really till I'm there.  I like to go to the grocery store and just see what inspires me.  I love to drive my kids up to the mountains.  I love to get away by myself in the car and blast country music from the 90s.

Sure, I can get along without a car.  I know everyone will help me.  It just stung.  And it changes things now.  I will rely on friends and family until we can get a nanny hired.

*****

Friday morning, right before all this happened, Josh woke up at 5.  He propped his head in his hand and stared at me for 20 minutes before quietly slipping off to work.  "I loved it.  You looked so beautiful." 

I woke up a couple hours later and rushed to get out the door to be at the hospital on time.  But I froze when I went to brush my teeth.  I saw someone who would soon meet her greatest fear, times 25.  I had no idea, but it seemed like my mirror image knew something.  She looked like a warrior princess waiting to attack.  Beautiful and calm.  Full of determination and strength.  "You can do this" she told me.

I was reminded of the day I learned my cancer had spread.  5 years ago.  A similar recognition and encouragement from the girl behind the glass.

I have never seen that pre-cancer girl again.  Although it would be fun for a while, I do not want to be her.  I want to see the warrior woman who has fought and conquered.  And I want to see her for years and years.

Tonight.  Hard to believe I am anything but healthy.  No symptoms.

something wicked this way comes

What's worse than a brain tumor?  How about TWENTY FIVE brain tumors?!  I didn't even know that was an option.  It seems very extreme, and the Dr. says not common.   

It is bad (really bad).  But not hopeless.  I will start IPI (Yervoy) next week in combination with the oral chemo Temador.  Explanations to come, but now I need to catch my breath (and change the laundry, and water the flowers, and feed the kids).

We had a lovely trip.  Every detail, down to the weather, seemed to fall into place perfectly.  I will get around to sorting through some pictures, but for now a shot from our four major cities...

Boston is a babe.  Boys on The Freedom trail.

We were spoiled in New York by my beautiful cousin Emilie and her charming husband Xavier.  He is behind the mask and we sit on their brownstone steps in Harlem laughing at his witticisms.  These people inspire me.  Super classy.  Love you guys, thanks!

An afternoon in Philadelphia.  Luke is up to no good.

Met up with Josh's brother in Maryland and D.C.  So fun to have cousins around!  Glad we got to experience the Linton Hotel Brooke and Ashkii! 5 stars!   Can't wait to do it again!

The best part of the trip was giving cancer the silent treatment for 10 glorious days.  Spoken of only briefly, and thought of sometimes just in passing.  I gave it nothing.

But tomorrow we will be talking and thinking of little else.  I start the day at  the hospital at 9 and won't be out of hospital I bet till 4:30 or 5.  I will have my labs drawn, a full body PET scan, brain MRI, an infusion of a bone strengthening medicine, and finally an appointment with the Doctor.  We will get the results and decide on a treatment plan.  It is more a matter and how much and exactly where the cancer is at this point.  I can feel at least 11 tumors.  One has shrunk during the trip.  Most have grown.

I keep hearing in the back of my mind, "Brace yourself."  I wonder if this could possibly be something good.  The miracle I have been praying for.  I try not to get my hopes up too high, cause,

By the pricking of my thumbs...

punishment fits the crime

So.  I'm sure some have been wondering what I am feeling since the last round of IL-2.  Because, after all, I don't need a scan to tell me what is going on with the tumors I can feel.

After the first two rounds of treatment, I could feel all tumors melt away, and none of those have come back.  However, there were always new tumors in new places.

This time there were two I didn't get rid of.  The one on my back that stabbed me one horrible Monday, and one in the arm pit.  I didn't know they were still there when I got back from the hospital, everything was surrounded in fluid (so much water at the end that I earned some new stretch marks).

Two days after I got home, I developed a sever case of the hives.  It was Memorial Day weekend, so the office was closed.  I decided to stay up all night and make sure I didn't start having trouble breathing.  This was no problem, as I cannot sleep after the hospital stays anyhow.  No sleeping pill can touch me after being fed Morphine, Demerol, and Dilaudid (in the same hour) for a week.  I think I go through a little opiate withdrawal the weekend I get home.  Anyways, my body developed some pretty serious, itchy welts (not sure why).  And as I itched, I felt a few small, hard lumps.  Under my ribs, on top of them, on my sternum, in the breast, and another in the arm pit.

Could I have had even just a week to believe that this fight may be over?  I was so sick, could I at least recover first?  Does this disease have no mercy?

The house smelled of discouragement for a few days.  But you can only live in that stench for so long.  We picked ourselves up and are moving forward.

I kept a pretty close eye on them, and finally called the Dr. last week to report.  My Dr. was at a conference, but the Nurse Practitioner thought we should wait a bit and see if they don't shrink.  As she put it, it's a little too early to peek.  She reminded me that with immunotherapies sometimes it gets worse before it gets better. 

I am actually typing in Boston tonight.  The kids are breathing heavily in the bed next to me, tuckered out from our first day of adventure.  Josh is at a conference here for a few days, and to obey our explore America rule, we are going to sneak in New York City and D.C. while we are back east.  We used almost all our sky miles to get here, which has been stressing me out (I have lots of trips planned in the back of my mind), but it took only one glimpse of the sea, and the look on my kids faces as they rode the subway for the first time, to know this was the perfect use of our miles. 

I will push for scans when I get home on the 20th.  Best case scenario, we see only what I can feel.  The liver and bones are still improving, and that puts us better than where we started in January.  I have to keep reminding myself that this is a possibility.  We have definitely seen results with the IL-2.

Cancer has broken the rules of summer.  It doesn't know how strict or stubborn I can be.  It will die.  The punishment fits the crime.

summer RULES

Linton official summer rules.  Does the punishment fit the crime?

1.  Snack options will be fruits and vegetables.
2.  Chores must be done by 10 am or additional chores will be assigned.
3.  If you tell mom you are bored, she will fix that by forcing you to clean the garage.
4.  Explore America
5.  With every complaint that is ridiculous (i.e. "He is bugging me") you will do a lap around the block.  No limits.
6.  You must ride your bike or walk to a restaurant if you want to eat out.  If we don't eat out all week we will all go get a treat on Saturday.
7.  2 hours of screen time per week (excludes watching Phineas and Ferb on mornings mom can't wake up on time, and the occasional movie).
8.  No cancer will be tolerated.  Punishable by DEATH TO CANCER.

Last day of school.  Was it really 2 1/2 weeks ago?  Time flies when you're having fun I guess.  We are loving summer break.