pinch me

Stressed to the max.  This week is almost over, and I am finally ready to talk about it.  We are still no closer to a decision on what to do with the remaining cancer.  Last Thursday my doctor took my case to the 'tumor board' where all the specialists help decide what is best for certain cases.  They called me back that day and told me they thought radiation might not be our first choice.  That I might want to do a trial they are conducting here at the Huntsman.  It is something similar to the very first first trial I tried to get on a couple of years ago.  They inject your tumors with a common cold virus, which attaches to the cancer cells, the body picks up on them as foreign, destroys, and even potentially gets the immune system to track down other cancer cells. 

In theory, anyway. 

This was not one of the 4 options that was presented to me when we got the results of the scan.  I was cool with any of those.

One was a trial that I didn't qualify for in January, but they have changed the rules since.  It was the inject the tumor with IL-2 and IPI.  I liked this because I'm pretty sure that that would give my tumor hell, as I had a great response with both of these drugs.  In January you needed a tumor to inject the drugs into (my armpit) and another accessible to to watch and biopsy (my adrenal tumors would have been too difficult to get at with a needle).  They have changed the rules to where you would only need one.  Well, when they looked into the qualifications, now that tumor is too big for the trial (I think it has to be under 2 cm).  Bummer. 

Another option was surgical removal.  I am okay with this, but the doctor thinks anything I can do to stimulate my immune system is a better choice.  Okay, makes sense.  Which is why he recommended radiation (we will call that option number 3).  However, another option we are looking into is getting this tumor out surgically at MD Anderson (Texas) and growing the TIL cells from it, freezing them in case I am eligible for a TIL transfer (chemo to deplete your immune system, then they give you your own T cells back, with the ones that where fighting the cancer in great numbers.  Also adding a little IL-2 to the cocktail.  It is a pretty miserable treatment, but I am so game for this, always have been).  The thing is, I don't even know if they will grow your T cells and freeze them.  I am doubting they would as it would be very expensive for a patient that isn't even doing your trial.  So I wonder if that is even an option, the doctor is looking into that.  I was up at the hospital on Wednesday getting some blood work done to see if I have the right blood for that anyway. 

The other thing we are throwing around is an antiPD-1 trial (the drug I wanted in Oregon) that is designed for people who did have colitis while on IPI.  This one is only in Florida.  I would so do this too, but it requires a trip out there every two weeks for as long as it's working, as my doctor and I are not sure if we need to get that extreme yet. 

Are you getting a picture of how confusing this all is?  So to add to my stress, a PET scan was ordered for this week to make sure we did indeed have a complete response in my bones, as the trial they are doing here excludes patients with bone tumors.  I have been doing brain MRIs and CT scans every 2 months, but not PET.  PET scans are the ones where I sit still for an two hours and stress like crazy as the radioactive sugar tracers tack down the tumors.  But it does make the cancer easier to find.  And I haven't had one since September (the one you saw).

Right after my scans, the study nurse came to talk to me about the trial.  She was running through the qualifications and one of them is you couldn't have had more than one systemic treatment.  I have had three (IL-2, IPI, Temodar).  She said she didn't know, but maybe they would only count the Temodar because it is the only one that is technically 'chemo.'  She would have to ask the principal investigator about that.  So I don't even know if that is going to be an option.  Wow.  The thing is...

Josh and I found a house one morning, Tuesday I think. 

We put an offer in the first 24 hours it was listed.  There were three offers made.  Ours was chosen.  I was laying in bed on my side reading through the contract, smiling about this dream come true.  A walk-in closet!  A large kitchen!  Big widows with plenty of sky!  Somewhere in the middle of these thoughts I happened upon a round, hard, tiny, but familiar lump on the posterior side of my armpit.  I had to use all my logic to convince myself that I was not in the middle of one of my nightmares.  Because this is just how I find them in my dreams.

Of course, it might not be cancer.  It might be a lymph node working hard right there by the tumor to attack it?  It might be a ball of fat?  I don't know though, this has all the feelings of something sinister.  Can you imagine my disappointment?  

I signed the papers.  As my sister pointed out, there really isn't ever going to be a good time to move for me.  I mean next month alone could find me in Texas, Florida, or my local hospital for frequent visits.  WHO KNOWS? 

So now what?  We put our house up, we wait to see what the scans show, and we move on.  Literally.  
But this has been a hard week.  And here are my kids that need me to function.  And here is my house that needs my attention.  And here is my husband who needs me to pretend it will all be okay. 

This is the kind of weight that has me wondering how tough I am.

A prayer this week that we will choose the right thing to do would be very much appreciated.  It is difficult for me to not know where to put my energy and hopes.  I need a game plan, and quick. 

the plan for now

We are still waiting on a few pieces of information before making our final decision on what to do next.  It will most likely be radiation (I am already on the schedule), but we will know for sure by next week.

These last scans proved to be very difficult for me as they got closer.  I started coming up will various aches and pains that I was sure were cancer related.  Stopped running due to pains in the very knee that had cancer a year ago.  Laid down in the afternoons complaining of headaches.  Josh and I started playing the 'Tumor or Zit?' game with every pimple that popped up on my face.  I felt very insecure about the way I have been using my time, and wondering if God didn't start to wonder why He was keeping me around a little longer. 

It was all in my mind, and I half knew it.  My body is still doing an amazing job of keeping this thing in check.  One growing tumor is incredible.  Seriously, the fact that there is nothing new is awesome.  My favorite outcome is that I will now be having scans every 3 months (instead of 2) because I am showing a great pattern.  Three months of freedom!!  Well, minus the 15 days of radiation. 

Still, life is being very kind to me just now.  This winter has been unusually cold and sunless (I think they said our coldest since the 1940s).  I always claimed to suffer from a mild form of SAD, feeling its effects in full in February.  But this year, even in Utah at its worst, I didn't feel depressed (anxious at times, yes).  It was just another month to be grateful for.   Another month to be with my family.  Another month to anticipate spring. 

And already my tulips are breaking through the ground. 

results are in

Adrenal tumors that we radiated - shrinking.  Brain, all clear.  Axillary tumor, growing slowly.  Great scans.  We are going to treat the growing tumor, looking into our options. More later.  Very relieved.

just checking in

I am sorry I haven't been in the mood to write lately.  It's a shame.  My kids have been absolutely darling lately.  I will have to catch up on them a little later.  I feel great.  I am loving these breaks between treatments.  If it weren't for the nightmares, I think I could forget this cancer thing for a while.  

My appointment with the doctor this month went well .  He said my response to treatments was nothing short of miraculous.  Said he had never seen that many tumors disappear that quickly.  I admit I have never heard of anything quite like it myself.  Now we are hoping and praying the response will last.  I have scans again the 6th of March.  We will then decide what to do with the remaining cancer (hopefully it is just this thing in the axilla). 

Thank you all for your love and concern.  I will keep you posted.

my condition

Last week I finished radiation.  It wasn't too bad, but I admit I have never been so lazy in my life.  That stuff zapped away all sorts of motivation.

It has always been bittersweet to stop treatments.  I know I still have cancer (armpit tumor), and now what am I doing about it?

I meet with the doctor next week, so we will see what he has in mind.  I think we will scan again at the end of February and take it from there.  It may just be that we keep the dang tumor in there.  It is in the perfect place for an easy biopsy if I qualified for a trial down the line.  It won't do any harm where it is... I think a lot of times after successful immunotherapy you can live with cancer in your body. 

Although I find myself sometimes anxious about the future, I realize that I have developed (or maybe discovered) something very special:  an unconditional love for my life. 

When I think of a way to describe it, I can only compare it to the love I have for my children. 

I am not always thrilled about their choices.  I am not always happy with them.  They may not turn out to be what I thought they should.  But I do love them deep down so perfectly.  There is nothing they could do that would change that.  I don't think I love them because of what they give to me.  I don't think I love them because they are angels.  I don't think I love them because they are brilliant and funny and sweet (they are though, guys).  I love them just because they are.

And I might love their potential too.

And so I am not always thrilled with the events that happen to me.  My life might not turn out to be what I thought it should.  I can't love it for what it gives to me.  I don't think I love it for the bright sunshine (there was almost none this January in Utah, and I was happy just the same).  I can't love it for being a perfect heaven (only sometimes it feels like it).  Some of these expectations are bound to disappoint.  I love it just because it is.

And maybe I love its potential too.  

Whatever happens I don't want to lose this perspective.   I pray that I can continue to love and appreciate, despite.  Unconditionally. 

I feel like I want to treat my life and my children like the gift from God that they are.  Now if only I could learn how to make my actions match my feelings.  I wish those deep down convictions would surface a little easier for me...

happy birthday to me

One year ago today I was waiting for a phone call.  That phone call told me that my melanoma was showing up in my liver, bones, and under the skin in lots of places. 

My doctor's last words after we had discussed stage IV and its treatments at length:  "The median survival from a stage IV diagnosis is one year."  And I had the bad prognostic factors that could put me leaving possibly much quicker.  "I think you'll still be fighting."

Last year on my birthday we were waiting in the mall for our buzzer to go off to get my favorite appetizer.  I got the dreaded phone call right outside of H&M.  It was one of those moments where I physically couldn't stand.  They scheduled me immediately for a brain MRI.  We gave the buzzer back to the Cheesecake Factory and took off.  Today on the way home from the hospital I said..."I think I'll have those avocado egg rolls."

 I love that the American Cancer Society calls themselves the official sponsor of birthdays.  “Happy Birthday” is a victory song for the 11 million cancer survivors celebrating birthdays this year.  

 And so it was for me tonight as my beautiful boys sang it to me.  This year they even included the "happy."

radiation therapy

Just wanted to let you know all is well.  We are back to survival mode this month, so not a lot of blogging.  Radiation is Monday through Friday until the 23rd.  It takes about two hours out of my day, and most of that time is commuting to the hospital.

They wondered if I would get nauseous because they are close to my stomach, but not shooting directly at it.  I did come home and throw up an hour after my first treatment.  I now take medications before I go in and that seems to do the trick.  

I am starting to feel some fatigue.  When I wake up I feel like someone has taken a giant glue stick to my back and stuck me on the bed.  Also my eyes feel sealed with rubber cement.  But I get up eventually.  And I found that if I keep my shoes on until the boys get to sleep, I can resist the urge to crawl into bed until the evening. 

The radiation techs said that the radiation will destroy what's in its path, but normal tissue cells have memory cells and will repair themselves.  Cancer cells don't have the same memory, they just die (suckers!).  They say the side effect of fatigue is from your body repairing the damage they are causing.  I have asked how long it will take for the tumor to die.  They said slowly because it is melanoma.  I haven't felt a difference in the tumor in my armpit (this is the one they are not radiating). 

I am also back to the old night sweat situation.  I wake up drenched and chilled in the middle of the night.  Often several times a night. 

These all sound like complaints as I'm reading through them.  That wasn't my intent.  I am going to say the worst of it is that in the middle of the day as I head to the hospital, and in the middle of the night as I wake up freezing cold, I feel like a cancer patient again.  I am reminded of my situation. 

It's mostly a mental thing right now. 

I am still trying to process what happened this year.  I have some thoughts on 'resolutions,' and sadness about how not all crappy things can be resolved.  Done, checked off the list, finished, etc.  They linger and we live with them.  Cancer will be one of those things, they will never stop looking for it in me.  

I am working on a photo album of 2012 for my blog.  What a year!  I think if 2012 was a game, I won!!!