happy halloween

We made it though the crazy holiday!  I didn't have to do anything for costumes this year, we all just found something that would work.

Oh, Sam.

Luke got a kick out of people who didn't know him saying, "You're Luke!!"  The force is strong with this one.

Josh won the office costume contest with the old Ken doll trick.

James couldn't dress up for school.  And I wasn't around tonight-I was dressed up like a cancer patient to have my CT scan and brain MRI done.

 

 Doesn't get much scarier than that!  Results tomorrow afternoon. 

MRI photo.  Boo!!!

great debate

I haven't learned much from the Seattle team this week.  They told me I would be starting either the first week of November (the one after Halloween), or the last week of November.  I'm guessing those dates are due to Dr. availability.  As we haven't gotten an answer from the insurance company yet (it is pending a Dr. review), it would most likely be the end of November. 

Of course, that is if I decide to go on with the trial.

This trial would be a great opportunity.  I don't know if I will ever qualify again, so this might be the time to do it.  It has a response rate of around 50%.  I have read that 25% will see all their tumors disappear.  It is a rough treatment, and I'm trying not to let that factor into the equation.  Being sick is not a negative for me.  The sicker the better.  I have developed a strange craving for nausea and fevers.  I associate those feelings with shrinking tumors, and I miss them so very much (but wait till they are actually happening, then I'm sure to change my story).  This trial is one of the most advanced and individual ways of treating cancer.  It uses my own tumor attacking T-cells (which have proved pretty amazing in the past).  It is a one time treatment.  I thought I would only be in the hospital for 2 weeks, but it looks like 3-4 would be the more normal range.  However, none of this come-every-other-week nonsense.  Once I've finished the hospital stay in Seattle it is likely we can do most of the follow up in Utah at the Hunstman Center.

So why do I hesitate?  This is, after all, my dream trial because it is so extreme. 

These are my thoughts.  The trial boasts 50% response rates.  When a person who has initially responded to IPI (this is the drug I did when it went to my brain) tries IPI again after progressing (they call it reinduction) they think there is a 60% chance you would respond again (although the numbers on a complete response are not as high as the trial).  And with my response, don't ya think my chances are higher than that?  And now, with the PD-1 in me, possibly those two could work together to do something even more drastic (trial combining the two drugs put the response rate at 60%).  So why in the world would I just not do IPI again? 

The only problem with doing IPI again is risking the side-effects.  And actually, I am not as worried about the colitis, as not being able to qualify for things down the line because of it (remember the only reason I got onto the PD-1 trial is because they were studying if people like me with major toxicities (side effects) to IPI would have any side effects to the PD-1).  The biggest thing at stake is not being able to get onto the TIL trial in Seattle after doing IPI (even though they will freeze my cells for treatment down the road).  If I had colitis again they would require a normal colonoscopy (which mine after IPI was not normal, even on steroids). 

So why don't I just do the trial first?  There are two drawbacks (maybe three if the insurance isn't on board, although I am not factoring money into the equation as per Josh).   I am worried about killing off my immune system, because it has worked so well in the past (the first part of the trial is lymphodepletion where they kill off your immune system in something similar to being prepared for a bone marrow transplant).  I realize it has not worked completely well, and I still have melanoma so the immune system hasn't figured it out completely, but still.  I can shrink tumors in days.  Days!!  Do I just need a dose of IPI every year to keep me stable??  If the TIL trial didn't work, would the new immune system work as effectivley when we did IPI again?  This is a question my doctor can't really answer (there have been so few people who have done this, there are a lot of unknowns).  They just don't have data.

The other concern I have is the long term effects from the TIL trial.  There doesn't seem to be anything major, and after communicating with some of the responders of this trial, they do not complain at all (when something obliterates your disease how can you have anything bad to say about it?).  But their white counts remain low years later, and some have complained of mild fatigue (Valerie are you reading?  What say you?).  Also, then if your counts are low you would have a hard time getting onto trials (trials are a melanoma stage IV patient's hope).  Yes, these are not big prices to pay, but what if I didn't have to pay them?  What if IPI would do what it did once and keep me pretty stable for another year?

I REALLY hate permanent damage.  This lymphedema in my arm is enough to remind of that.  I went into the therapist with it 10% bigger than my other arm.  After a week  and a half of therapy, and wrapping, and massages, and and the big pain the daily compression is, we got it down to 4%.  I should be thrilled, but it will take daily care and lots of caution to keep it down.  And it spread to my fingers last week, which just seems cruel.  I use those for everything!  Why my right arm?  Wasn't my leg enough?

I wish my decision was easy.  This is confusing, right?  I am trying really hard not to take into account money, my love of extreme discomfort, the luxury of being treated at home, and even the long term consequences (as they aren't that bad).  I simply want to do what would have the best chance at working.  And no one knows what it is. 

I am waiting for something to feel right.  And I suppose after the insurance company has made it's decision, and we scan and see what the cancer is doing, that feeling will come.  Either way I have some pretty exciting options.  I am so ready to fight again.  Too much down time.  Things are way too easy.  October is the best month of all to be a stay at home mom, and I have enjoyed every minute of cancer distraction it has offered me.

til harvest

The cells have grown enough.

I should have jumped for joy when they told me.  But I knew they would grow (these are my amazing T cells we are talking about).  And I knew when they confirmed this that I would be an anxious mess.

Because now I have a decision to make.  I am torn between what I think are my best two options:  Ipi here in Utah (the drug I did last June with amazing results and horrible side effects), or the TIL trial in Seattle.  Luckily, I don't have to decide just yet.  The Seattle doctor is trying to work with my insurance company to get the hospital stay approved (good luck with that!).  This will give me some time to continue collecting information and maybe to find some peace.

This is going to be a very hard decision to make.  It makes my heart race just thinking about it.  I will try and write up the dilemma here in a bit.

I know I am very fortunate to have options.  And honestly, they are both really good options.  But which is best?....

stay at home mom

Three weeks at home!!  I think that's a first since May.  I have not wanted to go anywhere.  Not even the grocery store.

And I feel great.  The fatigue I had from the PD-1 seems to have disappeared.  Tomorrow I have an appointment with the lympedema clinic to get a compression sleeve for my arm and hand so I can start exercising again (impossible lately with the large tumor, and then with the swelling once the tumor was gone).

For a couple of weeks things have felt quite normal.  Making jam, volunteering at the school, organizing my house, soccer games, piano practice, church, friends, family dinners.  Normal is wonderful.  This break has been very good for my spirits.

Next week we should have a better idea if this Seattle trial will be an option.  Even if it is, we will need to decide if that is the next step or if we want them to just freeze those cells for future use.  I suppose we will be scanning soon to see what's happening.  I don't have any more palpable tumors, so I can't really predict how that will go.  I don't have any pain, so it can't be that bad. 

Thank you all for your kindness and encouragement.  I'm starting to believe the best way to learn these two virtues is to be the recipient of them.  I should be an expert by now.

recovery

I am feeling good!  Movement is tricky, but we can work on that slowly.  There is a drain sticking out of my side that is cramping my style, but we should be able to pull that out next week.

The doctor said the operation went as good as it could have.  Said the tumor was about the size of a fist.  It had not invaded the muscle or major blood vessels, so everything is intact.  He again guessed I would develop lympedema, but thought the tumor would have caused that soon enough if I hadn't done the surgery.  Strangely the only real pain and discomfort I'm in now is not from the surgical site, but from the swelling in my arm.  Hoping it is temporary, but it is very suspicious of lymphedema.  I am pretty bummed about it (maybe extremely depressed for small moments), but I have Josh telling me it doesn't matter at all, and asking me if I'm alive in 5 years if I will really be complaining about a swollen arm?  Good point. 

We will see how things shake out this week, and get serious about getting it under control if it doesn't improve.  But do you ever have those strange sensations as you are drifting off to sleep of one of your limbs or your head swelling quickly (tell me I'm not the only one)?  I woke up one morning to the very thing, only it was not at all a dream.  I did not recognize my arm, and was sufficiently creeped out.  Josh said it looked like everyone else in America's arm, but not mine.  What a sweetheart. 

You know those other dreams you have about waking up from anesthesia and someone telling you something went wrong?  I kind of lived that one too when I was in recovery and Josh told me my Florida Dr. called to say I won't be able to come back for his trial.  He found out that signing a consent for another trial disqualified me for his.  It's a very long story, last week was a disaster trying to figure it all out.  I cancelled my surgery on Thursday because of the confusion.  But on Friday we got the okay for surgery in Seattle from the Florida Dr.  Monday during surgery they found out from the drug company it would not be okay like we thought.

I was not devastated, as I feel like I have gotten all the benefit I am going to get from the PD-1.  And it sounds SO nice to stay home for a while.  So, so, so nice.  I just wish we would have been able to factor that into the decision that was made.  Most likely I will be doing nothing for 4 weeks to see if they can get enough of my T-cells to grow in Seattle.  Like I said, there is a 50% chance they will get enough cells.  If some other tumor starts to bug me in the meantime then we may have to alter our plans.  And then of course if they can't get my cells to grow I will pursue other options. 

I haven't even told my Seattle and Utah doctors about the mix-up yet.  I don't know if I can handle one more conversation about it.  I spent a whole week pestering all three of my doctors last week, only to make a decision that doesn't work anymore.  It is very confusing to have three oncologists in three states.  They are busy people and have been very kind to help me form a plan.  This was the one that we all liked. 

There is a certain unbecoming phrase that has passed through my mind (and out of my lips) more than once this week.  It includes two swear words and is absolutely all encompassing and has brought me much relief.  Thank goodness for cuss words when you really, really need them.  And also thank goodness I do not swear regularly, or they wouldn't pack enough punch.

But all around we are doing just fine.  Now that I am needy again (the surgeon called me out on my independence the first meeting we had, is it that obvious?  Said I must take it easy, and let others do my chores for me as hard as it may be),  I am reminded how kind people are.  Our house is spotless.  Our fridge is full of good food.  My family takes care of my kids.  My friends come to check up on me.  Prayers have been said around the country for me.  We are really the most spoiled family on the planet.

I have spent a lot of time in bed trying to keep my arm elevated/wrapped/massaged this week, and following the Dr.'s orders.  I have been digging into melanoma blogs, if you are wondering what I've been doing (haven't done this for a long, long time).  Trying to find some others who have done TIL trials or other successful treatments at stage IV.  ***Spoiler Alert!!!***  They all die.  Well, okay.  Not all (Christina).  Most.  And the thing is, the way blogs are set up, you always know their end from the beginning.  What a strange way to read a person's life.  Backwards.  But not upside down.  It almost makes it all make sense. 

I am being reminded of some things while I read.  I have got to make an effort to write down what is happening along the way, because I have learned so much from these people's experiences.  These are people at the end of their lives, reading their own stories backwards, and have things figured out.   It's fascinating how everyone comes to the same conclusions.  Beautiful, simple, and inspiring conclusions.  The same ones that are drawn out of all the great books, and all the great minds.  They are at the end of every lovely story.  And every lovely life.  The moral of the story is always love in one form or another and it's so individual and universal-it almost takes your breath away. 

But no need to stop breathing here.  Not yet.  I have a lot of confidence that we have more successes coming our way.  I am not in my final chapter.  Kind of up in the air as to where we are headed next, but I'm not scared.  I am learning to trust that my story is being watched over and my steps guided.

Post-Op

Alisa is out of surgery.  The doctor said everything went really well. He said they were able to get all the tumor out and he was able to find a couple of nerves and avoid cutting them.

Alisa will probably need to do some physical therapy, in order to strengthen some muscles and get some range of motion back.  There is also a strong possibility that she will have lymphedema in her arm because of the large tumor it was affecting her lymph nodes.

She won't be doing any push-ups in the near future, which is devastating, she is obsessed with doing push-ups.

She is not in pain yet, but is pretty nauseous.  They have given her about every drug available for nausea, including some aroma therapy.

She mostly keeps talking about the pain she is going to be in, when the drugs finally wear off, I think she is a little too familiar with how drugs work. "its gonna hurt", sleep, "its gonna hurt", sleep, etc.

I was expecting something like this when she got out of surgery, no such luck.  Should I be offended?

http://youtu.be/IqebEymqFS8

Josh

hello seattle

Surgery is happening tomorrow morning first thing.  I wish I was here for fun, this place is just like the movies.  I will have Josh update you as soon as I come out smiling.  :)