Saturday, June 28, 2014

Mr. Billy Rubin is Not My Friend

We saw the doc again on Wednesday and things have become even more serious.  My liver is under extreme stress.  We learned that some measure of your liver function called bilirubin is now playing an important part in my situation.  The more stressed your liver is, the higher your bilirubin gets.  Once your bilirubin gets to a certain number, they can't give you anymore chemo, as your liver can't handle it. Unfortunately we are getting very close to that number.  I do not like that Mr. Billy Rubin.

The original plan was that I would get a second dose of my last chemo next Wed, but the doc was afraid to wait that long, so he gave me a half dose of the chemo that was working well for me a few months ago before we took a break to try the clinical trial.  We see the doc again this Wed to see if there's any chance that was enough med to just buy us more time to take more chemo.

It's been hard for us to absorb all this, focus on one day at a time, and hold on to hope.  Yesterday we had the conversation with Rory about what happens if this medicine doesn't work.  We talked to her about the village of people who love her and are here for her to talk to.  Most of all, we told her that her job right now is to keep living the life of an 8-year-old! Go swimming, play with friends, go to camp, etc.  We're looking into professional resources for all of us, as well.

I'm home bound and I sleep a lot but otherwise meds are keeping me feeling decent. My parents are coming to town today and more family is visiting through the week.

A favor to ask... My wonderful husband is AWFUL at asking for help and is working hard to do everything himself.  If you are going to Target, or can have Ro over for a play date, or want to bring a meal, please text him and just ask when you can do these things.  If you want to come visit and maybe vacuum while you're here, I'm ok with that.  If you can take Maybe out for a 30 minute walk. If you are willing to babysit me so Jason can get out of the house. Any of these things would be helpful.  If you need his cell, text me.

I'll keep you all posted after Wednesday's appt.  Hugs and love to all!


Friday, June 20, 2014


Things can change quickly in Cancerland, and they have done so again in the past few days.  As I mentioned in my last post, my last clinical trial didn't work, so we decided on a new chemo, which I started a week ago today.  In the five days after that, I had weird symptoms and even a trip to urgent care, which told us nothing.  On Wednesday I saw my doc finally and got some not-so-great news.

The cancer is growing quickly, particularly in my liver.  Because I just got some chemo, I have to wait until next Wed at least to be able to get any other treatment, so it's going to be a long week or two as we sort this out and see if the chemo is working.  I feel pretty crappy with sore bones and a swollen liver, which tires me out.  I'm horizontal more than I'm upright right now.  They gave me some morphine in case I needed it to be comfortable.  I took it once (without food, dumb me) and wound up sick for the next 12 hours!

So, for those of you who are kind enough to pray for me, a nice specific prayer would be for a "healthy and protected liver", as damage to my liver is the biggest risk right now.

If you send me notes, I promise I'm seeing them but may not always have the energy to respond right now.  Feel free to reach out to Jason, too.

Saturday, June 14, 2014

Messy, Messy, Messy

My last post described feeling a bit down.  Today, I have an explanation for it.  For those who have ever wondered why I "go dark" sometimes, not being as responsive to emails, etc, I've figured out that it's when I feel like I'm a mess.  Since around the time of that last post, I've been a bit of a mess, but hopefully I'm coming out of it now.

Why the mess?

1) Anybody out there have hypothyroidism?  It's pretty common. Basically your thyroid doesn't make enough thyroid hormone and you have to take Synthroid (synthetic thyroid hormone) to make up for what your thyroid doesn't make.  However, I'm apparently an idiot and realized right around the time I wrote that last post that I had forgotten to take my Synthroid.  For THREE MONTHS.  One thing your thyroid controls is mood and energy level, so I was one tired, bitchy lady.  I'm back on it now and hopefully should be fully regulated this week.  WOO HOO!

2)  I finished six weeks on the trial med, Palbo, and it didn't work.  I have a few new very small tumors in my liver as of scans 10 days ago, and since those scans, my spine and ribs have started to ache like crazy.  (By the way, I love you, Ibuprofen.)  Yesterday I started a new chemo so hopefully will feel much better soon.

3)  We've been in a state of unknowing the last couple weeks about what the next step would be if Palbo didn't work.  We were looking into clinical trials all over the country.  I was even signed up for two different ones and then they didn't work out.  I like having a plan, and that state of planlessness was weighing on me.

This past week, though, I had a great distraction from the planlessness.  We took a vacation to Michigan, where we chilled out, rented a house, and sat on a (sometimes chilly) beach.  My brother and dad came up for a couple of days to join us, and it was great!  Plus, our lovely friends Rebecca and Bobby let us steal their kiddo for 6 days, so Rory had a friend with her, which was AWESOME for everyone.  For those with an only child, I highly recommend renting a friend.  Text me for Rebecca's number and maybe she'll cut you a deal on renting Vivian!

A few pics  from our lovely week: