Thursday, March 28, 2013


PET scan says the new little tumor I am feeling is indeed cancer.  Also a couple of new spots near my aorta. 

The plan for now it to go ahead with the injection trial.  It will take a week or two for the blood tests to come back to for sure qualify, so I will have time to do my homework and make sure this is the best next step.

Honestly, I am feeling pretty devastated, if you know how that feels.

Monday, March 25, 2013

same old story

I wish I had more to report.  I tried asked the nurses to give me the PET scan results today, and they said they don't like to do that over the phone, can I come in on Thursday to see the doctor?  Yes, but I am so very nervous, as I do feel a new lump.  Well then...I can tell you it's not in the bones...and it doesn't look like there is something new there...

I do qualify to be screened for this cold virus trial done here in Utah (they decided they would only count the Temodar as an offical chemotherapy).  The next thing would be making sure my blood has what they want, which will take a couple of weeks to find out. 

I will look a little closer into the trial in Florida tomorrow.  It is a randomized trial (I've hated that experience in the past).  One arm gets the drug I want (anti-pd1), and the other standard chemotherapy.  It may very well be worth a shot right now. 

But this is all so boring.  Take home message here is that everything is still up in the air, and it is going to take a while to qualify for a trial, so I better practice some patience.  

Sunday, March 24, 2013

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. 

Thursday, March 14, 2013

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. 

Wednesday, March 6, 2013

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.