Saturday, September 21, 2013


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.

Monday, September 16, 2013


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?


Sunday, September 15, 2013

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.  :)

Sunday, September 8, 2013


The plot is thickening over here.  This week I slept in Florida on Tuesday night, Utah Wednesday night and Washington Thursday night.  I had some appointments in Seattle about a trial they are doing up there that I qualify for.  The tumor in my armpit is growing rapidly and giving me some major grief.  The plan right now is to remove that tumor in Seattle on the 16th.  Possibly continue on the PD-1 trial in Florida (wish I would have known I could do surgery on this thing while I was on the trial) while we wait to see if Seattle can grow enough of my cancer fighting T-cells from the tumor they remove.  In 5 weeks they would know if the cells were growing enough (50% chance of this) to continue on with the trial.  If we get to continue, the trial is 7 days of chemo to wipe out the immune system.  Then they infuse your new boosted immune system (the cells they grew that were attacking the tumor).  And then they follow it up in the ICU with one week of IL-2 (remember those days?).

This is something I have wanted to try.  They think 50% of patients get responses.  That's not long term, just any kind of response.  I don't know the long term data.  I have read some encouraging stories.  I have also read some discouraging accounts.  I'm not sure what to think, but I'm running out of options, and I need to address this tumor that is becoming unbearable.

I hesitate even posting plans when they are temporary, but I know everyone is curious.  Just be flexible, because there are a lot of variables that don't sound fun to type up, and may change the game plan.  But this is what we are moving forward with for now.

I am still laughing about the late night conversation I had with the kids after I had flown home from Seattle.  I was explaining that trial and mentioned that I would lose my hair.  "No!!!"  Luke's face said, horrified.  "No mom!  Don't do it!!!"  Luke is kind of into his hair.  He loves to have it long, curly at the bottom, bangs swept to the side.  And the smell of hairspray is one of his favorites.  "It's no big deal.  I do not care about my hair."  I say in absolute truth, although the eyebrow/eyelash thing will be a little harder to swallow.  "Besides, it will be fun!  When moms with cancer have to shave their hair, in solidarity all the boys in the family shave theirs at the same time!"  That did it.  Luke's arms flung up to cover his head.  As he ducked under them, audible weeping was heard.  "NO!!!  I won't do it!  I can't!!!"

So I guess we won't all be bald.  Josh at least has kindly agreed to join me.

The issue I am having is that the surgery will be quite major at this point.  The surgeon would expect lymphedema in that arm with the amount of lymph node involvement that seems apparent. When I lost my leg to lymphedema (that is dramatic of course, what I mean is that I have to cover it to hide the compression stocking that I have to wear all the time) I just had to be proud of my arms.  Slender and long.  I almost said no to the surgery because of this risk, but it would be a little like Luke's reaction.  And I'm bigger than that.  Right?  I guess we are all a little vain.

I was running a fever in Seattle, and have started night sweats again this weekend.  Combined with the increasing pain, and hours on the phone with hospitals and insurance companies, I am feeling like a cancer patient again.  Josh is worried.  I am grumpy.

All this under the turquoise September sky, and our bellies full of peaches, and the mountains all around us changing colors.  It's fall!  Cancer can't possibly be our reality.

Sorry about this graphic image.  My beautiful armpit!  This tumor seems to be growing every day.  Yikes!!