hu?

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!!!

life through his name

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

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.

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.

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.

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. 

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.