Wednesday, August 20, 2014

The Weird In-Between

We are (happily) living in a weird in-between right now.  We were planning for the end of my life to be coming in the next few weeks, and as you know, I'm a planner.  So, here's a peak at some of the things that we were in the middle of planning or dealing with when the happy news changed the direction of our planning.  This may not seem funny to everyone, but trust me, Jason and I have enjoyed more than a chuckle as we become aware of more and more things that belong on this list.
  • We spent a hefty sum on a new, adjustable bed that moves up and down, gives massages, etc.  We thought I'd be spending most of my days in bed.
  • I started giving away my jewelry to my nieces (no, you don't have to return it)!
  • I asked my parents what items of mine they wanted to keep and made sure they went home with them already.
  • We took my name off our checking account.
  • I cancelled my next dentist and eye doctor appointments.  Do you know how long it's going to take me to get back on their calendars?!
  • In a spreadsheet, I have most details of my End of Life Celebration written out.  I've assigned some friends to tasks in planning, communicating, making scrapbooks for Rory, baking desserts, etc!
  • I have a phone call to return to the city's Park's Department about the park swing we're ordering as a memorial to me.
BTW, someone has reached out and asked me if I'd write a post about how we talked with Rory about this.  I'll work on that.  I'm not a pro but I totally understand that anyone in this type of situation can use some words to try out and see if it fits their relationship with their kid(s).

Friday, August 15, 2014

Laying More Track on the Roller Coaster

Jason and I have exciting, happy news to share.  It's been a bit of a whirlwind the past few days and this has happened quickly.  We are now at the point where we are still on a roller coaster and happily are adding track to it.  Please bear with me for a long post.  I promise it's a good story.

Over the past 2-3 weeks, I've been feeling better.  I mean, better than I think I should being on hospice for 4-5 weeks now.  I called my doctor's nurse a few days ago and talked with her; I asked if I could possibly come in and get some labs drawn to see if this is a sign that, however illogical it might be, my liver numbers would have dropped enough for me to receive even a small dose of chemo.  It's tricky because hospice doesn't allow those kinds of tests, and being on hospice keeps you from being treated by your doctor.  No man's land.  So, to get this test, Jason and I had to make a few calls and arrangements.

A couple days ago, I went in and got blood drawn.  A few hours later the nurse called me and said, "Jill, I can't explain it, but your numbers look good.  Good enough to go back into treatment.  Come in tomorrow and see the doctor before he leaves for Houston." This morning, the hospice nurse came by and I officially withdrew from hospice!  (The nurse said she has done hospice for 6 years and has never withdrawn someone from hospice before because they just got BETTER!)  After that, I saw Dr. Ellis one last time, and believe it or not, after that, I had a chemo treatment again!! Some liver numbers are still very high (but have dropped in the last month), some are much much lower, and one is even back to complete normal.

When we saw Dr. Ellis, he came in with someone special for us to meet, his 11 year old daughter.  He brought her in and told her he wanted her to meet me:  "I wanted you to meet Jill because I wanted you to see that miracles can happen."  The doc and his medical dream team walked through the labs from when I was there in July the last time, a week after my last chemo.  I was SICK.  I was swollen like the Michelin Man; my bilirubin was 2.9, and 3.0 usually means complete liver failure; I was on pain medicines; I couldn't walk much without Jason holding my arm; I was exhausted and had to lay down in the waiting room waiting for my appointment.  There is no reason for them to think I wasn't in complete liver failure.

Everyone we saw couldn't explain what has now happened.  Here are two possible explanations:

A) Miracle, positive thinking, prayers, etc.

B) Scientific answer (short version):  when cancer drugs hit a tumor, it can cause what's called a flare response.  The drug starts working and causes a bunch of toxic chemical reactions, which can make a patient basically get sicker before they get better.  In the 10-12 drugs I've tried, I've NEVER
Not this kind of flair!
had a flare response.  Just not a flare girl (Flair girl, yes. Flare girl, no).  It's possible that because my liver had SO much cancer it it when we started this last chemo, there was an unexpected flare response that sent me to the verge of liver failure.  As the toxic reaction calmed down, healthy liver cells were able to regenerate and I got better.

C) A combination of both A&B.

We don't know where this will now lead us, nor how much additional time this has given me.  I'm still on pain meds.  I'm still sleeping more than the average bear and my energy isn't yet where we want it.  We continue to take it a day at a time.  I've tried almost every chemo out there, so we still have limited options if this one doesn't work.  I'll be getting chemo every two weeks, so we will still have a mystery on our hands leading up to each appointment, how ever many there are. I could be back on hospice as quickly as I was off, but the reality is that right now, I'm healthy enough to get treatment and am healthier than I was two months ago.

I believe that this turn in health, though, has definitely been propelled by every healing prayer pointed in my direction; every visit or card that has brought me laughter; every flower sent that I enjoyed seeing and smelling; every blessing cooked into food delivered to our house; every happy thought sent via text message.  From our family's hearts to yours, we can't thank you enough.  

One last piece that someone insisted I had to include in this post:  We told Rory that we had seen the doctor and had some news to share.  We told her that there was again a medicine I could try.  She clapped at the dinner table and smiled.  She asked if this meant there was even a slight chance it might all go away.  We told her probably not but we can always hope.  Her response:  "But that's ok.  We'll just take any extra days we get and enjoy them and have fun, whether we get a few extra days or a lot of extra days, right??"  I shouted, "God, I love this kid!!"

We are officially turning off the Meal Train until we should need it again.  Erin, you are an amazing friend for starting and running this thing in a way that made it helpful and easy for us.  We'll go figure out where our pans are and how to turn on the stove.  :)  And when we're not doing that, you'll find us laying as much roller coaster track as fast as we possibly can.




Saturday, August 2, 2014

"I have a few people I want to thank..."

Realizing now as I post this video that I should have gotten dressed up and stood behind a podium pretending to cry as I said this!   Hope you enjoy it anyway.


Friday, August 1, 2014

What is Hospice?

Jason and I didn't really understand what hospice was until I was enrolled in it.  I want to give you all a picture of what being on hospice looks like so far.

Once a week, a hospice nurse comes to our house to check on me.  Rather than go see my doc, I now see this nurse.  Because I'm mobile and feeling pretty darn good still, we focus on my medications: how they are affecting me, whether they are working, what side effects I'm dealing with, etc.  Any changes to how I'm feeling are discussed, sitting on my couch.  She also  takes a few vitals, and then goes home.  She's with us about 45 min/week.  There is a nurse phone number we can call 24 hours/day to get answers or help.  That's it.

I'm not house-bound.  I am up and about mot of the day and usually squeeze in one nap each day. Some days I have more energy than others, but overall I'm doing well.  My digestive system seems to be calming down and getting into a rhythm again.  For about two weeks I've been dealing with swollen legs, from above the knee to the arch of my foot.  Also swelling in my abdomen.  That was uncomfortable.  We've tried out some meds and I seem to be getting close to normal.  We've been measuring my belly based on how many months pregnant I look.  Right now I look 3-4 months pregnant, but it's been as high as 6 in recent weeks.  Down to 3 right now and feeling good about it.  Trying to get out for a 15-minute walk each day if possible.

I'm off to bed for now.  Rory leaves for sleep-away camp the day after tomorrow, for the first time.  School starts in less than two weeks.  Busy world here.

Family has been visiting and so many thoughtful, generous people have helped us out and brought things we need.  I'll do another huge post about that at some point soon.  For now, just know we are humbled, feeling love, and shoving love right out the door behind all of you!!

Love, Jill