Wednesday, April 25, 2012

The biggest fear for myself?  That we have seen the best of me.  That my progression has stopped.  That I will always have sadness in my eyes.

This weekend we made a quick trip the the National Park in Utah we have never seen.  It was delightful.  I was delightful.  And that surprised me.  Maybe I will be okay.

We stayed up late to go stargazing.  They say the Colorado Plateau has the clearest air in the 48 states.  There was no moon, and the stars blanketed the dark sky from horizon to horizon.  It was brilliant.  The wilderness holds such a powerful the peace.  I am grateful we have a most beautiful earth to face our ugly challenges on.

Josh declared he was in a good mood today.  I have been busy all day and happy.  The kids are doing great.  All is well (minus the evil cancer).

Friday, April 20, 2012

raging storm

I'll be truthful here.  I could write a pretty bitter chapter this week.  But I'm keeping to a short post.  And then I will try and get over it. 

This may be the hardest part of my journey yet.  Not giving into those bitter feelings.  Recognizing them when they come, but letting them pass right through.  I do not want to give them any of my energy.

But.  This week hope has stabbed me in the back.

As much as I want to believe that a good attitude about the whole situation will improve my prognosis, I don't know.  So far it hasn't worked for me.  Three years out of this I totally 100% believed I would never see cancer again up close.  Six months later it was back.  The beginning of this week I just knew this treatment would work and I would live years and years because of it.  Can you imagine my surprise?

How do I feel about the results this week?  How would you feel if someone peeked inside you and found a body full of tumors?  It's creepy.  There are tumors in the armpit, chest wall, breast, near the kidney, liver, bones, and back.  Other than the liver and bones, these are new since my last scan 5 weeks ago.  So it's not looking good for me.

I am not giving up on IL-2 all together.  Of course there is a chance that this next dose does something amazing.  But most likely I will "fail" this treatment.  Josh asked if this was my first experience with failure.  For sure with something this important, my one out of two treatment options.   I do think the IL-2 will help the Yervoy (or IPI, the other treatment I will try next) work better.  There is a tail end of the curve of people who achieve long term responses from Yervoy.  It is a minority.  I for sure believe I could be one of those.

There is also a new drug being tested right now called anti-PD1, it works similar to the IPI, but uses another pathway.  Dr. thinks this would be tried after IPI.  These immunotherapies generally take months to work.

And don't forget, in our back pocket we have the BRAF inhibitor (Zelboraf).  It is a very cool drug, can melt your tumors down in days.  The problem is, it works for about a year or less, then the cancer figures out a way around it and comes back in an angry mess.  Again, there is a small number of people who have been on it for years.  And yes, I would love to be one of those.

What about the TIL transfer in Maryland I was so excited about?  Still a possibility, but the more I research the harder it is to find people who have gotten a long term response on this trial.  It does seem to help for a while in a majority of the patients.  Right now my reasoning is saying, do I want to do that for just a few extra months of life?  What if it was a year, would that be worth it?  I don't know the answer.  It is the ultimate chemo experience (regular chemo plus IL-2) which I am not scared of.  But I would need to believe it could lead to a long term response.  I am still gathering info on this option.  The other problem with a trial is I think you need to be off of all other treatment for 4 weeks usually before starting.  I don't know if my cancer is slow enough for this.

Normally these treatments would extend my life months, not years.  I know nothing of normal, so I am not going to say that this is the case for me.   But what am I supposed to believe at this point?  I am so torn between faith and fear and hope and reality.  A confusing place.

Cancer, guys, is not a blessing.  Maybe if you have it at some early stage, it changes your life for the better.  Maybe if you are old enough to 'go', it is a great way to say your goodbyes.  But I have not heard people who have lost their loved ones to it, call it great and thank it.  In fact they HATE cancer.  They donate money to wipe it off the face of the earth.  They do their best to get the word out.  To prevent, screen, support.  They would not wish it on anyone.  It is such a mean disease.

The blessing of cancer is the perspective it puts on things.  Living your life in gratitude is a lovely way to live.  Trust me.  But what is an eternal perspective going to do for me when I'm already a part of the eternities?  Why give this perspective to people who can only use it for X amount of years/months? 

As we remember the Titanic this year I couldn't help but ask Josh if this is not a boat slowly, so slowly sinking to it's grave.  The terror of knowing you are going down, drawn out over months.  He said its a hard thing to watch from the shoreline (Josh just realized this week that I am not going to be around in 20 years.  He has had his moments this week).

Who can help me?  Only God at this point.  But he doesn't pull everyone (no matter how deserving) out of the water.  That I know for sure.  I know he can.  That is not the question.  

What about the kids?  Don't they deserve a mom and a dad?  I didn't even come up with that one!

I'm telling you, it gets ugly over here sometimes.  Even Spring seems to mock and torment me this week.  How can this be?  What is this ugly take on life?  I remember when I was first diagnosed I would drive by a group of teens dressed in black with purple hair and nose rings and heavy eye liner and chains.  I in my flowery white buttoned up blouse and pink cardigan would say aloud in my car "I get you guys.  I am one of you guys!  Let's hang out!!"  Which is totally silly because these people are probably not angry.  They just look the way I feel.

I hate cancer!!

But here is the trick.  This hate is not always a bad thing.  It gets you mad enough to keep fighting.  And I will.  Don't take this depressing post to mean that I am out of the game.  No way.  I will continue to fight.  Always.  I will throw every ounce of courage and strength I have in the battle. 

And I will even come around again and revisit hope.  And hope knows no limits.

The thing about these dark days is, they don't last.  I just need to get through them and like I said, get over it.

James has almost perfected this piece he played earlier on the blog (recital next month).  Raging Storm is the name.  I wish I could pound something like this out right about now!

Wednesday, April 18, 2012

This just in

Nothing in the brain. New subcutaneous lesions scattered about. The tumor in the back is not connected to structures. Liver and bone tumors stable. We will do the last course of IL2. It will likely not be the magic bullet and get me disease free as per the Dr. We will most likely do IPI (yervoy) next and hope the IL2 will help us get a good response with that drug. Could have been much worse. Could Be better. I so hoped the Il2 was it. I think it was my best chance for long term response. We are grateful it has had some effect. Thanks for all the prayers today, we are doing just fine.

Tuesday, April 17, 2012

early scans

Just heard from the Dr.  We are scanning today (brain and chest/abdomen CT).  Tomorrow afternoon I have an appointment about results. 

On the bright side, I don't have much time to stress about these scans.  On the dark side, I am cramming all my stress into one day.  Yikes!!!

Sunday, April 15, 2012

of limits

The tumor in my back has doubled in size as far as we can tell.  I will call the Dr. tomorrow and see what that is all about.  I am guessing they will do radiation on it.  Eight days ago (last Sat.) Josh gave me a massage and smothered my back with an anti-itch lotion (I have itchy skin after IL-2).  There was nothing palpable.  Two days later a very noticeable tumor was next to the spine.  You could even see it when I bent over.  It did not hurt last week.  Now it does hurt to touch and also just at the end of the day.  Yes, melanoma tumors can grow that fast.

I have been thinking a lot about limits.  How I so carefully set them for myself.  And maybe this is just a coping mechanism.  "I can handle this until _____, at which point I will not be okay."  A line is drawn.  It used to be that I said I can handle this until it gets to my spine or brain.  CNS involvement is not okay (although this could be just under the skin, and not really in the spine).  But you know what?  You cross the lines you drew, and you can handle it.  Somehow.  Somehow I get out of bed and take care of the kids (and this week try to make spring break fun for them) and do a little housework and date my husband and go to church and walk the dog and I don't know...keep moving.  And I bet I could even do this if there was something in my brain.  I would have to.  People have their limits, but I bet they are much higher than they think.

My friend Cory wrote a post on his blog mentioning me.  This is a guy who runs 100 mile races.  I think that 10 miles is my limit, but honestly?  I suppose if I trained and trained and worked and worked, I guess a normal person like me could run this kind of race.   I would have to start by losing the limits. 

Cory wants to be there when I run my next half marathon.  I don't know, can you do halves after you beat cancer?  Seems like you would have to go all the way.  Marathon 2013?  Anyone?

Monday, April 9, 2012


So the plans were these:  Three weeks from now we scan.  If there is no major progression, one more cycle of IL-2 beginning in May, ending in May. 

This morning I am just out of bed and almost into my clothes again.  With a whole month home to recover I was feeling really pretty good.  The boys are on spring break and were enjoying their first day with their grandparents.  I got to do some housework and this afternoon I stood in the sunshine spilling into the kitchen.  I smiled and put my hands behind me to arc my back.  I stopped short.  And gasped.  There was something foreign (yet familiar) under my fingers.  Right next to my spine.  That hard marble lump that I have said good bye to twice. 

I don't know what you are supposed to do when you find something like this...again.  But I freaked out.  Ginger and I laid on the bed and I sobbed into her tight curly neck.  My mind full of all kinds of bad thoughts.  I finally pulled myself together and called Josh.  Poor guy has been taking care of me all week and all weekend (we have had some horrible nights) and just got back to work and gets a call from me.  "I found something.  It's a tumor on my back, Josh!!" 

I called the Dr.s office.  The nurse practitioner said we will try and not scan early.  As long as it's not causing pain, growing rapidly, or other tumors start popping up, we wait three weeks to scan.  We hope that this will respond just like the one on my neck.  That maybe the immune response I am having is making it flare up, and will eventually melt it.  Please be the case.

If it does start to cause trouble we would most likely radiate, and then I don't know if we could still get another cycle of IL-2 in, or if we would move to the next drug.  Trying really hard not to worry about it. 

Mental battle begins.  I cannot waste 3 weeks in worry.  I can win this one.  But man, it's going to be tough.


They mentioned that IL-2 patients have very vivid dreams.  I read a girl's experience where she was traumatized by the nightmares she had.  Well I had a nightmare one night last week:  I had stage IV melanoma.  The Dr.s said there is no cure at this stage.  I was going through this horrible treatment.

And then I woke up.  I was in the middle of this horrible treatment.  The Dr.s have told me there is no cure at my stage.  I did have stage IV melanoma.  Yikes!!!

Sunday, April 8, 2012

life through his name

So much hope.  Always.  Through everything.  I love Easter to remind me.

Friday, April 6, 2012

just another ordinary miracle

Second cycle complete. Thank goodness. This was not a favorite. We spent the week watching heart rhythms, beating down fevers, measuring outputs, tossing cookies, balancing electrolytes, and worrying about blood pressures.

This afternoon my Nurse Practitioner went over the usual discharge questions, then asked sincerely, "How are you?" I sighed. Nauseous, bloated, a little confused, fluid in my lungs, sleep deprived, and a mouth full of thrush. A week of hell behind me. Not to mention the heart that had been racing for a week, and has carried a huge burden for the last few months. But honestly? "I will be okay." "You know I have never seen subcutaneous lesions disappear as quickly as your did?" She looked me straight in the eye, "It's a miracle your melanoma tumors are shrinking."

I guess I heard the same thing, in a different way as we drove out of the parking garage into the the sunshine. Everything was so lovely! Spring has slipped into the valley. White and blue mountains, green grass, billowy clouds, and bulbs bursting out some color. By habit I reached up to feel the tumor on my neck. But there is nothing there now.

There are two ways to live your life - one is as though nothing is a miracle, the other is as though everything is a miracle. Albert Einstein

So glad to be home. I did write a few posts last week that I am waiting to get some pictures for. Life is very kind to us, truly.

Thursday, April 5, 2012

IL2 - Round 4 - Update 3

Sorry I didn't update last night.

Alisa was pretty sick most of the afternoon.  Her blodd pressure was really low so they spent about 2 hours getting it back up.  It is amazing how tired she gets when her blood pressure is low.  They put her on some medication and also tilted her bed in a trendelenburg position, apparently it helps until the medication can do its job.

I think because of that they did not give her a dose last night.  She has had 6 and I am betting she gets her 7th sometime today, although they have not said.

Tuesday, April 3, 2012

IL2 - Round 4 - Update 2

Besides the nurses there are also assistants that help when we need things.  There is one young kid that wants to be a doctor that is the best.  Alisa got an older bed this time and was not as comfortable as the newer beds she has had in the past.  We mentioned it to a couple of people and they said they would see what they could do.  When we told Wade, he immediately went to some vacant room and brought back a new bed.  While he was changing out the beds (the Nurse Practitioner was in the room also) he asked if we wanted a printout of Alisa's heart rythm's from last night (Alisa asked him for them last time when she had some heart murmurs), he thought we might be interested in seeing the ASYSTOLE.  I don't even know what that means but when he said it the Nurse Practitioner gasped and said he should not worry us like that.  He asked her if he wasn't supposed to print them out, but she just said he shouldn't worry us.  Found out later (when Wade asked us later if we still wanted the printout) that this is what they call it when your heart stops...

Apparently when she was throwing up last night it put so much pressure on her heart it stopped for like 7 seconds.  It isn't anything to worry about, I guess it happens regularly.  I was laughing inside the entire time, maybe you just had to be here.  I attached a picture for reference.

Our neighbor brought Ginger and the boys to see us, we went for a little hike behind the hospital and it was a nice break.

Alisa has had 4 doses and will get her 5th at 2:00 AM.

Monday, April 2, 2012

IL2 - Round 4 - Update 1

They just gave Alisa her second dose.  She is feeling about the same as last time and has been sleeping most of the day.

The most excitement was when they tried to put here PICC line in and I almost passed out (again).  I almost passed out the first time when they kept trying to get the needle into her vein.  Imagine a nurse sticking a 6 inch needle in and out probing for the right place, I could handle it for a few minutes but then had to sit down before I fell down.  Today the needle went right in, but then they stick a small cable into the vein for the tube to follow, it kept getting stuck, like trying to fish a wire down a wall and you keep hitting something you can't see, the nurse would pull out the cable and it would be bent and blood kept dripping out, they just kept trying.  Not sure what they did (I had to sit down) but eventually they got it to work.

We (I) watched the Kentucky/Kansas game with little interest, I was out when NC State lost.  Alisa really enjoyed the game.

Alisa might have mentioned that they allow dogs here in the hospital.  One of our neighbors is going to bring Ginger to visit sometime this week.  Just realized it is weird we don't really want anyone to visit but we can't wait to get our dog up here...Anyway, I asked one of the nurses up here if there were any rules about bring the dogs (what time they can come, how long they can stay, etc)  She said.  "Anytime will work, some people even have them stay over night, although I don't think that is the best idea.  They do discourage dogs that bark, and dogs that try to bite the doctors.  Other than that, no rules"

Hopefully Ginger will behave herself but I don't think she has really been around doctors.  I am trying to convince Alisa that she really needs Ginger to stay the night with her, I have heard animals can have a real positive influence on the patients. 

Sunday, April 1, 2012

im not yousto ants

We are packed. The laundry is done. The house is clean. Garbage is out. Bills are paid. The schedule is written out. Aunts and grandmas given their assignments. Presents are wrapped as bribes for the boys to open after they finish their homework and piano each day we am gone. They are caught up on their homework. They are bathed. Nails trimmed. All the things you have to do before you leave on vacation.

We will tell our kids goodbye in the morning and head out.

I think about how easy it is, really for us to do this. Mostly, I think, because I have sisters. I don't worry a bit about the kids when we are gone. I don't worry about the dog.  I have a neighbor who loves her and walks her while we are gone. I don't worry about Josh's job.  He has been able to work from the hospital, and work extra the weeks we are home.

I don't know what I'm worried about. Oh yeah, the cancer. That shadow that has been following me around for a year now, darkened in the last couple months, seems so cold and close right now. I don't know why Josh struggles like I do with some pretty sever panic moments as we approach the hospital weeks. But these are some of hardest hours. No more denial or distractions, it's 5-6 solid days of beat thing down. Take as much medicine until your body can't function and your organs are on the verge of shutdown. This is the storm we are headed into.

The hardest part is driving away from these boys.

We got the boys some super cheap phones so they could get a hold of us whenever they needed to as we are gone so much.  I had to share some of the texts from Sam we got late at night last time in the hospital.  He has a hard time falling asleep, even when we are home. 

Of course everything Sam writes melts my heart because we share the same spelling gene.  Favorite sentences here include:  Im getting scerd (scared).  I am not yousto ants (used to aunts).  And I am reely reely scerd come home pleas with Mom.  Sweet babies.  Josh says they are going to be tough kids after this.  I am for sure going to be a soft mom.