Saturday, January 29, 2011

The good, the bad and the itchy!

I guess I am going to go a bit out of order, but here goes.  Yesterday, I woke up with a fine itchy rash on various bits of me, behind my knees, forearms, belly...  I did something that I don't usually do. I contacted the doctor immediately, not waiting to see what would happen.  The kaiser doc was concerned that it might be my liver going into failure, so I got an early blood test.  I did research online and it fits a side effect of my chemo perfectly.  So here is the good: my bilirubin (liver function test) is NORMAL!  That does not mean I am out of the woods here, but it means that my liver is functioning better.  It is also the test that would tell them if I would get chemo on Feb 9th or not.  The verdict is most probably 'yes' at this point.  That is part of the bad. I am on a half dose of chemo right now. If my liver function is that good, I will get a full dose, so I am kinda scared about what the side effects will be like.  
oh.. and as for that Texas comment. We are not going to Texas. I just used the word 'y'all' in that post and said I talk like that because I lived in Texas.  We are supposed to try to go to Puerto Rico!  It is a trip with Andy's brother's family.  It might happen now... I have to wait and see.  
The other exciting news is that on Feb 9th, the same day as my next dose of chemo, Andy will be pledging allegiance to the flag and get his 3rd citizenship.

love love

Friday, January 28, 2011

Subscribing to the blog...

There is now a little 'subscribe' section in the top right corner. Hopefully you can use that to get automatic updates from the blog... please let me know one way or the other.

Wednesday, January 26, 2011

The latest

So, I have been eating my new diet, taking my new herbs, seeing my primary acupuncturist and energy worker... and I think it is working. I have no definitive news from my doc, but my liver does not hurt. My belly does not hurt, I am eating a little (still not enough, but some). I have a little more energy. Today, I made my own miso soup. That is the first time I have fed myself more than a bowl of cereal in a long time.
As my acupuncturist said today comparing my state to Monday. I am "much much better. Still really terrible, but much better."
That is the scoop.

Sunday, January 23, 2011


So, the weekend is over. I am doing a bit better than I was last week. Bob the acupuncturist is back in town, so I will see him tomorrow for the first time in a couple of months. My oncologist, when I saw him last week, said the magic words for me 'there is nothing you can do to support your liver'. Them's fighin' words. Of course that was exactly what I needed to hear. I did a bunch of research and found a couple of supplements and a liver friendly diet and I am generally feeling better. Better enough to get bored and grumpy.
Today, I stared a new therapy. It is called Quantum Pulse. It is a machine that one of my chemo nurses has at her house. She has invited me to come use it anytime and has given me a key to go in when she is not there. Thera are some amazingly good people in this world. You can research it on the internet, but basically it works on the assumption that the human body has an electrical charge of a certain type that is healthy. It creates that charge to reflect onto your body. Kinda telling it how to be healthy. I am going to try to go every day. Got not much to lose. She also has a detox footbath I did. I think it was too much, because my liver has been hurting today more and I am grumpy. I will lay off the foot bath, but keep trying the machine as it seems fairly gentle.
The kids are keeping busy and we are helping that to happen, so that is good. Andy and I are a bit stressed, what a shock, but are together. Tomorrow, Andy is going to go to work for a bit. He took all of last week off. So that will be a different rhythm. I have a couple of good books. Ever read Christopher Moore? He is really funny!
love love to you all.

Thursday, January 20, 2011

Deep breath

Rebecca wrote a beautiful blog post about what's going on and how she's doing and then through a series of unfortunate strokes of her finger, as she learns to master her new iPad, managed to erase the message irrevocably. After spending a while trying to recover the message I get to write my version of events while she goes and has a rest.

Earlier this week, her recurrent fever and pain got to the level that we again ended up at our favorite ER. After a series of test, that took WAY too long, the doctors confirmed that there was nothing wrong, other than the cancer. What they found was that the cancer in the liver has progressed rapidly and aggressively. The pain she has been experiencing is pressure from her growing liver pressing on her stomach. The fever is a common symptom of this type of tumor. The good news is that with this understanding of what is going on the doctors have put her on 'pain meds' that have greatly reduced her symptoms. The reason 'pain meds' gets put in quote marks is because it is worth noting that she continues to be an incredible light weight when it comes to drugs and her pain is being managed by doses of ibuprofen.

Given the relief from her symptoms the last couple of days have actually been really nice. She's been up and about and even playing ping-pong with the kids on our newly converted dining room table. She's also having fun playing with her new iPad... did I mention she got an iPad?

Now, as ever, we get to wait. Early in February she will have more tests and we will find out if the new chemo is helping. If it is then, great, we are on track for some unknown period of time. If the new chemo does not slow, stop or reverse the progression of the disease in the liver, to quote the Dr.: "The decline can be precipitous'. So, with an incredible sense of deja-vu we know that "it could be 2 months, or it could be 2 years".

If we get the 2 month version; it's meant to be as good a way as any to go. A growing fatigue, a slowing of the mind and body until she falls asleep and doesn't wake up again. There are definitely worse ways to go.

We will keep you updated if anything changes and when we get the next results in early Feburary. Meanwhile, we continue to enjoy each day together as a family to the best of our ability to enjoy... and we really hope you will do the same!

Love you all,


Monday, January 17, 2011


day two of intermittent fever. yuck. This chemo does not come with fever, so I guess my body is trying to get something out. I will talk to doc's tomorrow. Maybe get an answer, maybe just drugs,maybe not... Dont hold your breath for any answers.
love love

Wednesday, January 12, 2011

day 1

Day 1. That is what the chemo nurses call the first day of a chemo round. This chemo I get only on day one. The round lasts for 28 days. So I am going to have a variety of phases to go through before I start. There are days that my bloods may be low and I am susceptible to infection. Days that I am more or less hungry.
Today: is day 3 of no fever, so it looks like I am over the flu. My biliruben was high in my blood so that means that my liver is having a rough time of it. Since my liver has to break down the chemo (that is also hard on the liver) they only gave me a half dose today of the new chemo. They also gave me a steroid that helps with nausea and lo an behold, I came home and ate more than usual. It felt really good. My goal is to eat a bunch more. I am down to 149 and fit in my cousin's skinny jeans again. They were on the shelf for a year...
I am glad I am on this chemo and think it is going to help. There are lots of side effects and most people do not get all of them. Nausea and burning mouth and hand/foot syndrome seem to be most common. I could lose my hair, but we will just wait and see. I am not cutting it off this time. The good news is that none of the side effects kicked in while I was getting it. That has happened before.
For those of you with iphones or ipod touches. Plants vs. Vampires took me through the whole chemo time. (Its a goofy game)
I am a bit hyped on steroids while being tired, so I am going to rest.
love to you all

Friday, January 07, 2011

Its (as) official (as it gets)

Looks like a I have a flu. Simply a worse version of what most folks have right now. My appetite has started to go up again, so eating is happening.
I have chemo next Wed at 10 am. I will go no matter what. It should not be a problem.
Thats all she wrote.
love love

Thursday, January 06, 2011

your fast paced news channel for health

So, I dont have pneumonia. Dunno what it is and am working with one doc to try to figure it out and the other doc to think about starting chemo while the problem still exists, or to wait...
Keep you posted.
love love

Wednesday, January 05, 2011

quickie update

Hi folks.
So the chemo keeps getting postponed because I have a fever. I think it is pneumonia, but no one knows for sure. That is how crappy I feel though. In bed. Low fever, up to 100.3 that comes and goes for a couple of days at a time. No appetite. Yep, very skinny again. This is what happened 2 years ago for months before I went to the doc. I am not waiting this time. The doc's did not respond today, which is fine as I had acupuncture and two trips out would have done me in. Tomorrow I will push for a chest x-ray to get the scoop.
that's it right now.
love love