if the fates allow

This is Josh, scribing for Alisa.

She tries not to lift a finger.  Her only movements now are to the bathroom.  She has told me to gather the family several times for final goodbyes, as she feels this is her last...

Of course it's not, its just the IPI kicking in.  It began Christmas Eve with horrible nausea.  Christmas Day she got up to watch the kids open presents, then got back in bed and didn't want to be talked to, touched, or seen, or moved.  She is much like a cat that way, hiding in the garage in a corner until the worst is over.

But she couldn't hide.  We had to take her to the acute care clinic the next day to have her checked out.  They ordered an upper GI scope, to see what was going on.  There wasn't much diarrhea, so the symptoms were a little mysterious.(did you hear my stomach? [bathroom break])

The scope showed some erosion.  And we won't need to wait til the biopsies come back because we started steroids tonight, after the diarrhea started.

Alisa has been lying in bed looking up recipes all day.  Which is not only a waste of time, but pure torture for her.

Please pray the steroids work quickly.  She would love some goat cheese.

I can't complain

I remain almost symptom free.  I can't believe I only have fatigue (daily naps) and an occasional upset stomach to report.  At this rate, I will get a second dose on Wednesday.  Pretty exciting.

I know it's a little late, but I wanted to mention Thanksgiving.  I will say of all the lessons I'm learning, gratitude may be the most useful. 

It seems like in the end, when people look back on their life they wouldn't change things, but they wish they would have enjoyed all they had and the stage they were in.  I have been at what I thought was the end, and this certainly was my regret.

I can honestly say since my cancer diagnosis (and the worse the cancer got, the more true this is) that I have been grateful for where I was and what I had.  Most likely because I see life now for the precious, fragile, expensive gift that it is.

Sometimes when people ask me how I'm doing I kind of feel like they want the honest truth.  How are you, really?  Maybe I'm not telling the whole story on my blog (for sure I'm not).  But I'm certainly not skipping the bad parts here. 

The truth is, I can't complain.  When I start, and I do sometimes start, my heart just isn't in it.

Yes, I guess my life is hard.  I sort of have a gun to my head.  I do not feel 100%.  I have no idea how much money I have, as all my bills are in appeals with the insurance company.   I am running out of options.  That list could go on I suppose.

But do you realize that I wake up to my best friend since junior high?  And soon after a dog bursts into the bedroom and insists on kissing our faces good morning?  She is followed by a 10 year old who wonders what I'm making for breakfast.  He wakes the other brothers up as I drag myself out of bed and grab Josh's robe-which hangs right over a heater vent.  Heaven!  I make breakfast (unless Josh beats me to it or I have been nice enough to buy cold cereal) while they emerge from their rooms in clothes they know I won't let them wear.  We have that debate.  Every morning we have that debate.  They eat while I compile a lunch for those who don't want what's on the school menu.  James hasn't chosen a hot lunch in years.  Luke can't find socks.  Or a coat.  Sam stuffs his papers in his backpack that has not been cleaned out all year.  I try not yell about that.  James is tying up loose ends from yesterday's homework.  Finally they are ready and it's time for the carpool.  "Love you, have a nice day!"  "Love you too Mom!"  "Love you too!"  "Love you too!"

All that happiness before 8 in the morning.  We are literally just getting started.

So when I answer that I'm doing great, it's not just out of convenience.

It seems like others with cancer, or something horrible, who could complain all day use their words to praise and thank, rather than complain.

Maybe they, like me, are just happy to be here.

all is well

I keep waiting for the side effects to kick in here so I have something to report.  But there just haven't been many.  My stomach is maybe a little rumbly, and I might be tired.  A very different experience with IPI this go-round .  Last time I was in the acute care section at the hospital by now, unable to keep anything in my stomach, and in terrible cramping pain.  Also my tumors were shrinking like crazy.  I could feel them all melting away by Tuesday.

Maybe this time I will have a more normal reaction.  People don't generally see the side effects until about three weeks into treatment or later.  If I don't develop the side effects (colitis), I will get the medicine every three weeks for a total of 4 doses.  That is the plan for now.  I will for sure let you know if anything changes.

IPI it is

After a very anxious week, here we are.  With IPI dripping in my veins.  My kidney is functioning at about 50%, so it looks like we will keep it in there.  For now.  I am not entirely sure how I feel about all this, but taking action right this very second feels a hundred times better than having no idea what is around the corner.  At least I can plan on being sick.  And plan on an amazing response.  :) 

the waiting game

Yesterday we pushed back the IPI infusion to the 27th.  The tumor board discussed the case.   There was only minimal growth in the kidney area, but it has an "invasion component" that makes it necessary to treat.  It used to be sitting just on top of the kidneys, but is now reaching it's little fingers into it.  One concern with tumors there is the possibility of the cancer throwing some tumor emboli out into the body (like blood clots but made of tumors?).  Never heard of that!  Didn't need another way to die of cancer to keep me up at night, did I? 

So they want to see if surgery would indeed be a possibility.  They need to see how well that kidney is functioning in order to make that determination.  If the kidney is not working, they may want to take it out.  If it is working, the surgery would compromise it's function, and we aren't really interested in that.   I really think it's still working (going with my gut here) and that we will end up doing the IPI and not the surgery, but I don't mind having all the facts before we make that decision. 

If the kidney is not functioning, we would do a PET scan and see where the other cancer is (if there is any other cancer, they didn't report the status of my other little tumors) to see if it all could be surgically resected.  If all the cancer could come out with the knife, that would be pretty exciting.  Going from 100+ tumors to NED (no evidence of disease, the gold standard) would be incredible. 

The previous decision to go with IPI before the TIL (Seattle) trial came down to the numbers, really.  We took out the money factor, and the side-effects factor, and it still looked like IPI had the better chance at a response.  The attractive thing about the TIL trial is the possibility for getting a complete response (all my cancer gone).  It will be hard if I never get a chance at that, and just possibly the stars lined up for that treatment, I may never know.  But I would hate even more to not give IPI a chance again, after what my doctor called an "unprecedented response" with my one infusion.

I wish these treatments were studied enough to have a clear outline of what you do first, what you do next, what you save for last.  We don't have that with melanoma as the drugs are so new and the data so scarce. 

Blah, blah, blah.  This blog has turned into boring medical blah.  It's the only thing right now in my small world that is blah and yet that's all I write about.  Huh.  I will work on that.

a plan!

Things are looking...good?  It's all relative, right?  The cancer is really only growing in the right kidney area.  There are multiple tumors there, and they are actually smaller than they were when we started PD-1, but they are invading the pole of the kidney.  So we need to take some action.  This is the spot they radiated in January of this year and the place that was causing pain when I started the PD-1 in May.

We have a date to start IPI again, November 13th.  The doctor will take my case to the tumor board on Thursday and see if the surgeons think it's operable.  But most likely we are going to see if that miracle IPI will work it's magic again. 

Josh and I think this is a great plan.  We wish I didn't have cancer at all, but I have a ton less of it after this last surgery, and the PD-1 seems to have kept things in other places pretty stable.  We are feeling really very lucky.

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.  :)

update

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!!

easy decision

I talked to the doctor Friday night (I was out of phone and internet range last week).  He said he was surprised with what his radiologists concluded: when the numbers were crunched they estimated a 9% growth, which is within the bounds of what they call 'stable disease' and allows me to continue on the trial.  Today they set me up with appointment to start up again on Wednesday.  

The doctor has seen two patients respond late (after the first 12 weeks), and would hope I could join that club. Two is not super encouraging to me, but hey!

The only trick is this tumor in my armpit.  It needs to be taken care of (growing, and fast).  You can't do surgery or radiation while you are on the trial.  So the plan is get as much of the trial drug as possible, and as soon as I the tumor has to be dealt with, come back to Utah and get it surgically removed (it may be too entangled for that at this point) or radiate it.  I'm sure at that point we would look at doing something systemic as well (IPI again, for example). 

I read through my scan reports last night.  The on my adrenal gland is gone (this would have helped my percentages, although it was under a cm).  There is one near the kidney that has shrunk a little (about 2 cm so that may be pretty significant).  It is probably that tumor that was causing me pain before I started the trial.  There is one that has grown right next to it that is invading the right kidney.

Two of the new tumors have grown a little.  One near the aorta in the abdomen, one right pectoral lymph node.

I am fine with going back, just a little bummed that I flew out there for nothing last time.  And now I have to miss Sam and Luke coming home on their first day of school (mom candy).  And I thought of all the time and money I would have if I was done traveling, and it was sounding really fantastic. 

But of course, then I would still have cancer, with less options.  Not my favorite. 

p.s.  Things are getting interesting around here...I sent James off the his first day of Junior High today.  Funnest thing I've done in a long time.

results

The results were mixed.  Shrinkage of a couple tumors, but mostly growth.  The doctor was going to have his guys look at my scans on Wednesday before he gives the final word, but it looks most likely like continuing will not be an option.  The great news is the brain is still clear.  So I have options available, and the possibility of other trials. 

I will write later, but wanted to let you know.  I'm not super surprised as I have been feeling the growth.  And maybe because I was prepared, I am not super sad.  Ready to finish the summer out strong, and then make some decisions.

big week

Today I go in for scans.  I won't find out the results until Friday, when I fly back to Florida.

I was so hopeful when we started this drug.  Now I'm not so sure.  The armpit in my tumor (I just went to erase that error, but figured that's kind of what's going on here) continues to grow.  I now have some numbness in my upper arm, and it zings every now and then with certain movements  (mostly when I'm loading the dishwasher-should I stop?).  I'm sure it's pressing on a nerve.  And at what point are we going to have to take action (surgery or radiation)?

The rules are that these scans have to show less than 25% growth of overall tumor burden to continue the trial.  I am planning it.  Not sure what we would do if I get kicked off, I guess it depends on where the cancer is (I'm sure anything in the brain will disqualify me as well).

The good news is, there has been no pain since it went away that first dose.  These two tumors in the armpit shrunk most definitely and quickly after the first dose, but have now grown back to original size, or possibly bigger.  I haven't felt anything new pop up.  So that is also good.  Who knows?

I will for sure let you know.  Thank you for all your thoughts and lovely prayers.  I am sorry to have neglected my blog.  I admit to falling into some sort of semi-depression lately.  But physically I feel good.  Tired, but at the end of the day that's hard to complain about.

Mostly I'm just scared.  Sure I put on a happy face while I put Luke to bed, but when he goes to the kitchen for a drink I sob ugly sounds in the dent where is warm body has just been.  My sweet little boys!  And then just as suddenly, I have to pull myself together when he climbs back in.  This is the double life I live.  How long can I keep this up?  And which life will win in the end?

hello

My heart has been quiet for a while.  I wonder what to say when people ask how I am doing.  How has my summer been?  Am I liking the new house?  How are you feeling?

Physically I feel great.  The second dose of AntiPD-1 was supposed to bring on more side effects than the first, so I was a little bummed I didn't feel sick at all.  No night sweats, no chills, no diahrreah.  Other than a pretty strong pull to my bed for an afternoon nap-I felt no difference.  Tumors seem to be stable, or maybe smaller, but not a definite difference from the first dose.  The large axillary tumor is still alarmingly large.  The third dose was completed on Wed. and I have only felt a little chill in my bones and a desire to sleep.

Mentally, I do not feel 'great' yet.  I worry about things.  Well, I don't allow myself to worry about things (like is this really going to work?) by shutting down parts of my brain or something.  I am just numb somehow.  This may be a way I cope with things, but it is not the way I want to live.  I am trying to break away from this pattern, and hopefully will find success.

One year ago they found cancer in my brain.  In 25 spots.  One year ago I was devastated. 

I am so grateful that I am still in this fight.  It's a fight till the death, and usually does not take this long for someone to win.  But I'm holding my ground.  I am praying that science can stay one step ahead of my disease.  If every year I just need some medication to give me another year...

I used to wonder why we prolong our lives.  Why we even offer toxic medicines that are only supposed to give you a few extra months (this is not the case with my medicines so far, as they do have the potential for long term responses).  But every day I get it.  The kids are so funny, and the moon is so wonderful, and the raspberries so ripe.  Anything for more of this.  Even just a little more.

Today I had a plan to blog about all our recent events.  I had Josh take the kids to the rope swing by the river (I cannot get anything done on the computer when they are around-I would much rather be hanging out with them).  I started typing and soon the world went black.  An hour later I was awakened by the slamming of doors and kicking off of shoes.  I had only gotten two paragraphs typed.  The last one talked about my desire for naps.  :)

So hopefully I can stay awake long enough to fill you in here pretty soon.  Thank you for your concern and continued prayers.

breaking news and pain

Last week the pain was getting a little out of control.  This strange, new pain.  Sometimes it just whines at you, and you can demand it stop, or get yourself busy enough to drown out the noise.  You can ignore until you try and do something normal.  For me that was bending over to tie my shoes.  Also walking up stairs hurt.  There was no exersizing because taking in a deep breath was out of the question.  Take a pain pill and all that stuff could be gone.  But then you feel like crap and sleeping anyways, so you didn't do anything.  Those were the choices when the cancer whines.

But sometimes it screams.  Like it wants to get out so bad.  And there is no choice but to silence it.  Because nothing else on earth matters but getting rid of that pain.  You can't see or think past this kind of pain.  It is all consuming.  The kind that puts you into tears.  The pain pills don't bother you then, because you were getting nothing acclomplished without them.  For that kind of pain they give you breakthrough pain meds. 

Besides the fact that the pain hurts, it terrified me.  So far my only symptom of cancer has been soreness in my bones when I put weight on them (over a year ago guys-I now have no cancer in my bones).  It has been the drugs that have made me sick, not really the cancer.  But now here is the cancer taking over my body and mind. 

I have been dealing with this pain for a while now.  It got to the point where I always felt it.  And I often had to take pain pills. 

But Monday morning I woke up feeling okay.  So okay in fact, that this house that we just bought, that I haven't even cared about, suddenly mattered.  It suddenly mattered that I didn't have a couch to sit in upstairs.  It suddenly mattered that I have been sharing the basement bathroom with my boys.  I knew it would someday, mostly because I could tell it mattered to Josh.  He has been working on this house every spare minute.  Luckily his mom knew it was important to him, she has been here working since we moved.  My family has been here often feeding us and cleaning up.  I just couldn't see what all the fuss was about.  It didn't matter to me.  I have been focused on getting my dream drug and getting out of pain. 

But suddenly this week I see the bigger picture.  Last night Josh got the flooring done and we opened the front door to the most beautiful view of the lake and the mountains and the clouds and the valley.  I for the first time was excited about the move.  The move that happened a month ago. 

I smiled and took in a deep breath.  It didn't hurt.  It doesn't hurt.  I have not had any pain pills all week.  Sometimes I feel a little nauseous.  But feeling way better than I did 2 weeks ago.  I have a hard time believing that this drug has worked so quickly, but really?  Is there any room for doubt over here?  This is exactly what happens to me.

Today I keep getting alerts from the annual ASCO (American Society of Clinical Oncologists) meeting which is going on this week.  What is the big study coming out?  A phase 1 study of IPI (Ipilimumab) plus AntiPD-1 (now it has a name-Nivolumab).  When patients are given the maximum dose they are producing a 53% objective response rates (tumor regression of 80% or more).  So incredible.  Seriously.  Those numbers are incredible.  Their conclusion?  "Concurrent therapy with nivolumab and ipilimumab had a manageable safety profile and provided clinical activity that appears to be distinct from that in published data on monotherapy, with rapid and deep tumor regression in a substantial proportion of patients."

Rapid and deep tumor regression.  I am pretty sure that is what is going on over here in Lehi Utah, folks.  Incredible. 

sick and grateful

I have been sick this week.  It's been hard to determine if it's the cancer, the pain pills, or the PD-1 infusion.  Not liking the pain pill side-effects.  Sure not liking the pain.  But strangly loving the things I know for sure are from PD-1.  Like the flu-like symptoms, and especially the severe chills I get in the middle of the night.  I wake Josh up to witness those.  Because that my friends, is an immune response.

I am almost sure that my little tumor in the armpit, that I first felt a couple of months ago, is on it's way out.  The large one?  May be loosening up.  With IPI it took 5 days to notice tumor shrinkage, I think this is even faster.  No major side effects yet.

Wish I had more energy to write about all the things that are filling my mind.  I have spent enough time in bed to get something accomplished in here...  They say the fatigue usually lasts only a few days after the infusion, so let's hope for that.  And for a complete and miraculous response.  :)

Thanks for all the prayers and kind words.  God has been so very good to us.

right now

It's happening!!!

on my way

Brain MRI looks good. Insurance company is being reasonable.  Plane leaves in 30 minutes.  This is finally happening!!

may 19th

Not in a writing sort of mood.  But I know you are wondering about this week.  The insurance company finally responded Friday, and I will be starting the medicine this Wed. (assuming I pass my brain MRI tomorrow, I will fly out for testing on Tuesday).  They (back to the insurance company) did not give me the answer I wanted, so I will continue to battle it out.  But it is sucking all my strength to wait for phone calls, to be on hold, to leave messages, to try and explain the situation to dozens of people.  To hope.

I do not mean to complain about the money.  We don't need a bake sale (yet).  We have budgeted $8,000, and although the insurance is asking me to pay more, we also have more.  We just don't want to spend it on hospitals if we don't have to (we have other bills and dreams believe it or not).  If we shouldn't have to (which is my opinion). 

Today I have been on pain pills all day for the first time.  It is only the second time I've needed them during the day. 

Today is also our 13th anniversary.  I cry when I think about it.  All the loveliness and now all the ugly things we have had to deal with.  Josh is the most amazing person in the world.  I have a hard time not feeling like I've ruined his life, but he says 'no question' he would have married me even if he would have know.  I really wonder if I would have married him, I don't know if I could choose to break someone's heart. 

I guess it's a good thing we can't see into the future.

mother's day

I have given three wonderful children life, but I can't shake the feeling that in some strange ways, they have given me mine.

I am alive, in part (or mostly), because of these three reasons to live.  They are the part of me I won't give up on.  There have been many days I thought I could not go on.  But they come out of their rooms in the sunny mornings, their bodies still warm and a little limp, open up my blanket, and curl up right beside me.  Big eyes staring at the ceiling wondering what the day will bring.

There was this day last year, some serious fight stirring in me.  I will need that magic again this week in a battle I didn't think I would have to fight.  It's me against the insurance company.  It's a long story, but basically 'the board' denied coverage for the trial.  My mind was very clear as she read off the reasons why they made that decision, and when she was finished I debated every point with perfect logic.  I just wish I could have said it with power!  My voice was shamefully quivering.  I was on the brink of sobbing my face off.

She said "Yes, I see what you're saying.  Let me call you back."  She took it directly to the head MD and called back an hour later.  They are gathering information and will get back to me.  They will pay for some at least, she assured me.

They better, I don't know who would want to deal with this angry mother.  One who has researched this cancer, her options, and this drug in her spare time.  One who for the first time had to take a pain pill during the day today.  One who knows there are drugs out there that help her. One who has tasted victory and will not accept defeat.  One who would do anything for those boys who call her mother.

Bring on your best.  There is no match for this. 

the first stage of grief

Well folks, turns out I was in complete denial.  The pain is tumor related.   Some of the symptoms don't match gallbladder disease.  One of those is the pain I'm getting lifting my right leg when I put a sock or shoe on.  There is a tumor right by the muscle that makes that motion.  Another clue is that the pain is not at all affected by what I eat.  I have been putting this to the test, eating some pretty greasy, gross dinners to see if it would make things worse.  It never did, I just got fatter.  Also just the location of tenderness is pretty much right by the tumors.  The gallbladder looks fine on the CT scan.

I was so amused that I hadn't seriously considered it.  It was gallbladder to me 100%.  "Cancer....hurts?"  I ask in disbelief. 

I came home with some pain med prescriptions.  Hopefully only for occasional use.  

And tomorrow I could have started my dream drug!  Wow.  I guess I can wait 2 weeks.  Right?

if you are wondering why the word cancer stikes fear into the hearts of man

I'm still in Utah. 

After a very frustrating final call to the insurance company this morning, it was clear we would not have approval today in time for my flight.  Nor would we likely have it until the end of the week.

And now let me vent.  I called my insurance company right after my appointment with Dr. Weber, before I even left the Moffitt cancer center.  I told them I was accepted into the trial, that we needed to start the approval process.  I talked to the insurance man at Moffitt.  The Moffitt people were very reasonable and kind.  The trial will pay for the drug, and the insurance picks up the doctor visits, infusion room, and lab work.  Moffitt was willing to charge network prices, even though they are out of our network.

The people at my company said they would get things going, and although the process usually takes 14 days, it could be expidited.  Good.  I set up an appointment to come back to Moffitt 14 days later.  The insurance company said they would get back to me with an answer.

I had my doubts.  I had tried to work something out with them before my first visit and they were ridiculous.  So, I started bugging them, trying to find out where we were in the process.  I left message after message.  I finally got to the the advocate doing my case last Monday.  "The process is started, it has been submitted to the committee."  "Okay, perfect.  So I am supposed to get on a plane in a week, will we know by then?"  "We should have an answer by then, yes." 

Still.  I kept calling.  I kept leaving messages.  My call was finally returned on Friday afternoon, three days before I was supposed to leave.  Guess what?  I had just broken my phone.  I tried to call her back an hour later.  Voice mail.  I got very nervous.

We moved on Saturday.  Said goodbye on Sunday.

Monday I woke up and called my 'advocate'.  "I was going to call you, I just didn't want to wake you up."  Wake me up??!!  "Sorry about all the messages.  I really need to know what is going on, my plane leaves this afternoon."  "So...it has been really hard with the time difference with Moffitt and playing phone tag and all that, to get all the information we need."  "Tell me about it."  I said knowingly.  "But we are finally ready, and the committee will be looking at it and we should know in 14 days."  Insert a long and tearful explanation of what I was told was happening, and wondering how this could possibly be happening.  "Do you want to talk to the department that does the approval?"  Yes, yes.  I want to talk to someone, anyone!! So I get that department, who tells me that they just received my information, but are missing all my documents to prove that I need to go out of state.  In short, they didn't even have the information they needed to make a decision.  I knew then that I would not be boarding my plane this afternoon.  She said the information they needed was never ordered.  That whoever was handeling my case had dropped the ball.

I asked what would have happened if I had not called them today.  "I don't know.  There were no orders, so I don't know."  Wow.  Glad I've been calling everyday and everyone says we are in the process, and we will have answers soon. 

I am still having a hard time believing this.

But let me tell you why I did not break.  First of all, I remember that this company did pay $350,000 in 2012 to keep me alive.  Yes we have a high deductible every year (met it every January since 2008 with scans alone), and pay monthly, but nothing compared to that.  They have been perfect up until now. 

And second, I have for a sometime had some pain in my right side, under my rib cage.  This last week it has escalated.  I have 2 pretty big tumors right there, and have been radiated in that very spot.  But I have worred it is a gallbladder issue.   One morning I couldn't get out of bed.  But by the afternoon I was up and okay.  A couple days I have taken a tylenol to get me through the day.

This weekend it got bad.  But I had to move.  I had to pack up.  I had to clean.  I had to say goodbye to the very best neighborhood that could possibly exist.  I had to do it all in pain.  Pain is so consuming.  I could not get excited about anything.  Not the new house, not the drug I was about to take that was going to save my life, not even my children's little witticisms. 

This morning, at 4 am I woke up in pain.  The kind you can't stand.  I had Josh get me a pain pill.  And 20 minutes later I felt good for the first time in a few days, my side felt like the rest of my body.  Wow. 

And so, I will see my doctor tomorrow about this pain.  It could be the cancer.  I would be very sad in that case.  With all the cancer I've had, I haven't had to take anything for pain yet.  Could be the gallbladder which if they can remove it on Wed. I would still qualify for the trial in Florida (they rescheduled my appointment to start 2 weeks from now).  You have to be 2 weeks out of surgery before you can start. 

This is confusing, sorry.

Basically, I am hoping for the following:  that this mess up all happened for a reason, that a simple surgery will get rid of this pain, that I will still qualify for the trial in 2 weeks (guess what? We have to repeat brain MRI since they will be over 28 days old in 2 weeks), that the insurance company will help pay for this (even if it does get approved I pay for the first $8,000), and that I somehow cope. 

I have so many wonderful things to write about.  This business has, unfortunately, pushed all the good aside for now.  I am sorry to admit it. 

business or pleasure?

The trip was a success!!  I am on the schedule for starting the drug on May 8th (assuming I can work out my insurance issues, which are still up in the air).  I will go back every other week for a quick appointment and the drug infusion (which should only take about 90 minutes).  In three months we will scan and see if it is working or not.  Of course it will be working, so we will do the same routine for another 12 week round.  If (when) I am still responding I would go every 12 weeks for 2 years for the medicine.  I originally thought it was every other week for a whole year, so 6 months was a nice surprise.  It's a small price to pay for possibly the best medicine melanoma has seen yet. 

From what I understand the response rates are around 25% or better.  It is drug very similar to Yervoy (IPI) that I responded to so well to in June.  It acts just the same way, but uses different pathways.  Pathways that aren't showing the same side-effects as IPI, and the side effects are generally less severe.  This is the first trial of this drug that would let me in because of my side-effects from IPI.  This trial is to see how patients who had dose-limiting toxicities with IPI (remember I could only take one dose of the four you are supposed to receive because of the colitis) would do with the anti-PD1.   It is a very exciting opportunity.  This is the same drug I tried to get in Portland. 

It will be very interesting to see what happens.  Will I respond quickly, as I did with IPI?  I hope so.  I have now lost some range of motion in my arm due to my growing tumor.  It hurts when I stretch, reach, and is very obvious when I swim.  The pain is above the tumor, and it feels like a tendon or something has just been pulled too tight, and has no more give.  So I kind of need it to work quickly. 

In the meantime we need to move!  We close on our house today, and have to be out of this one by Monday.  So ready or not...

Just found out I qualified.  Sitting on the softest beach, watching the sun go down and the moon rise.  It was a good night.

Nothing more romantic than the ocean.  Even if I was alone.

good to go

everything went well today in Florida.  Alisa will come home tomorrow but is likely in the trial and can start soon.

-Josh

I would elaborate, but I don't have the skills for the blog.

cleared for takeoff

Brain looks good.  I fly out to Tampa tomorrow for my appointment on Wednesday.  I will be alone so I must be brave.  I prayed to try everything, and here is my chance. 

check it out

My nephew was on almost all of our local stations yesterday.  How cool is that?

plan a

We have decided to try the Florida trial first.  I will keep my appointment there on Wednesday.  I will have a brain MRI this week to make sure all is good there.  All we need is that to remain clear, and the stars to align.  Not too much to ask, I hope.  In the case there is something in the brain, we will likely treat it like we did last time it showed up there.  If the brain is still clear, but I don't qualify for some reason (there always seems to be some reason), I can come back and be re-screened for the injection trial here.

So sorry for the unanswered calls and messages.  They have meant so much to me.  I haven't felt like talking much, or explaining a situation I barely understand.  I can understand the need for 'space' during certain crises.  Required partially because it is hard to add others' anxieties to my own.  These last couple of weeks it seemed quite impossible. 

But it's over.  We have a plan.  I am finally smiling inside again.  

as of today

We are still waiting on a few pieces of information.  It is a long and complicated.  It gets longer and more complicated the more I find out.

Bottom line is, I have an appointment to see the doctor in Tampa on the 24th (to get on the waiting list for the pd-1 drug).  I also have an appointment to get this large tumor injected with a modified cold virus on Thursday (the trial they are doing at the Huntsman).  It looks like I can't do both, and either one is going to require another brain MRI. 

We will be making a decision by Thursday likely, either way.  I thought this was a pretty big deal until I heard the news from Boston today.  Some things (most things) aren't really that bad. 

I will keep you posted.

follow up

Josh read my last post this afternoon and claims he 'lost it.'   Said that he doesn't like to see everything in one place.  "I can take one thing at a time."  Like he had never lined up our troubles, and certainly never added them up.  Surprising, the way he can compartmentalize.  To me everything is always all together, right in front of me.  I even include the weather in the mix of how the day is going.  Sometimes it seems like a beautifully orchestrated movie, and sometimes it just seems like a mess.

Communicated with the doctor today.  He is trying hard to get antiPd-1 one way or another, and if that doesn't work come up with a plan b.  My job now is to be patient with the process.  Okay.  I can do that.

Going ahead with the house.  Josh is excited about it.  I am trusting him on this one.  Not worried, honestly.  It's the other things we have going on that are going to give me an ulcer.  

Rainy Monday afternoon with a tumor in my armpit and a poodle on my lap.  I had been crying and Josh snapped a picture of the pathetic scene.  I felt immediately better when the boys got home.

super glue

The drama of this week!

Here is a little breakdown of some events:

Monday.  After three days on the market, a ton of interest, and too much cleaning, we get an offer on our house.  I am happy with the buyers, I always saw a young couple here. 

I talk to my nurses and nurse practitioner.  I explain that I am having severe anxiety over the new cancer.  I am not feeling good about the injection trial since I have cancer in other places.  I make a case for doing IPI again.  My doctor is out of town this week.  He will check in in the middle of the week.  I explain I can't find a PD-1 trial in the West that I qualify for (I had been researching and calling around.  Very time consuming).  They mention the one in Florida that my doctor has talked about with me before.  We had reasoned that with nothing new showing up (we didn't know about the new tumors yet) this may be extreme (it will require a trip to Florida every other week for up to a year).  Well now that there is some new growth, I am seriously considering it.  It is with the PD-1 drug that I tried to get in Oregon.

We get the inspection report back from the house we are in contract for.  There are some major repairs we were not aware of.  I was surprised, and got a little nervous.

Tuesday.  I get a hold of the doctor in Florida who is conducting the PD-1 trial for people who have had dose limiting side effects from IPI (that would be me).  I give him some background info and he thinks I may be a candidate!!!

Wednesday.   We fax some of my records to Florida.  Or try, rather.  The faxes were not making it through and I had to keep bugging people.  I hate it when I get that way, but it has to be done. 

Thursday.  Josh convinces me to do something fun for spring break (tragically, we had a beach house on the Oregon coast all lined up for this week with my sister.  I have almost sworn off ever planning a trip again, as they all seem to get ruined by cancer).  My kids had been with their grandmas a ton while we were showing the house, and I hadn't seen them enough.  I was happy to be in the mountains again.  But all the time I'm stressing.  Checking my email all the way up the lifts.  Waiting for word from Florida.

Friday.   Florida gets my paperwork.  My heart sinks when the doctor explains a blood test that was ordered a couple of weeks ago came back to show I was HLA A2 negative.  The type that is not allowed on their trial.  He is in the process of amending the trial to include those of us without this antigen.  But that won't take place for a few weeks, and then there are 5 people on the waiting list before me.  I can't get on the waiting list until I am seen by him, and even then there are no guarantees, but he is guessing if I qualify I could start in about 6 weeks.  As much as I tried not to get my hopes up, this was a disappointment followed by great and noisy sobs.  So, so close!!

I decide to check my armpit tumor to see if we can wait 6 weeks.  HUGE.  Feels like a golf ball.  When did that happen?

I go to bed, but feel nauseous and in serious pain.  These kind of symptoms will drive a cancer patient crazy with worry.  I take everything I have in my medicine cabinet, which is next to nothing as I have packed everything away.  No pain pills, so I tough it out.  Even with anti-nausea meds I end up tossing my cookies.  I finally fall asleep around three.  Luckily, no problems since.  Most likely just a stomach bug or something.  Or a serious reaction to stress.  I would not be surprised.  One of my biggest anti-cancer lifestyle goals over the last two years has been to minimize stress.  Not succeeding in this right now. 

Saturday.  I wake up early to get the house ready for the inspector to do his thing at our house, and for our buyers to come back and get the full report.  Keeping your house spotless is kind of a joke.

We hear back from our sellers that they are willing to offset only a portion of the repairs.  This has me in a complete meltdown.  I can't understand why this could not have been a smooth situation, given everything else we are in the middle of.  We now have to decide if we go through with this, knowing we are going to have to fork out the cash we were going to use on some necessary and some cosmetic changes.  But if we don't do it, we did just sell our house (we didn't really think this out so great, did we?), and there is not much on the market right now.  And location was our big thing.   It is in a great place for the kids...  We have to respond by this afternoon.

So, you know.  Just life and death decisions over here.  Just deciding what to do with all our money.   Everything up in the air.  All this week.  And it seems only to be escalating.

The crazy thing is, it looks like I'm holding it all together.  But honestly I feel like these days are all just jimmy-rigged and could fall apart at any moment. 

Somehow it hasn't happened yet.  And maybe if I can hang on long enough...

results

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.

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.  

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!!!