10 April 2006

Just the Facts, Ma'am

A list of facts, in sets. I will start with bad and move to good, as that is always the way I prefer to receive news.


1. As was implied by my last posting, GH's liver function has gone all wacky.
His bilirubin totals are high enough so that he should be jaundiced, although for whatever reason, he's not. As some of you know from personal experience, once the liver starts to go, it's really hard to get it to come back. There's no liver dialysis, no magic pills. Poor GH's liver is filled with metastatic tumors, and it just can't keep up with the demands that it's under.

2. The liver is the toxic waste processing plant of the body. GH's liver is thus working double time. Its processing is impaired by the presence of tumors and it has to handle the cytotoxic drugs that pour through his veins every week.

3. GH's tumor marker counts, which are a gross measure of cancer activity, are nearing all-time highs. Not much else to say about that one, except that it indicates that the treatment regimen GH has been on is no longer working.

4. In an attempt to protect the liver and kill some cancer, GH will begin a four-drug chemo regimen on Wednesday. We're bidding Gemzar, the pancreatic cancer "gold standard" goodbye since it no longer appears to be working. Instead, GH will be loaded up on 5FU, Leukovorin, Oxaliplatin, and Tarceva. The first three are IV drugs, the last a daily pill that he's already started. During weeks when he gets all three IV meds, he'll be hooked up for at least five hours. We've been spoiled by hour-long infusions, so we're not looking forward to that. Plus starting a new regimen and not knowing what to expect with side effects is always scary. I just hope it helps.

5. Despite all this crap going on, GH looks and feels better than he has in months. Weird, but nice.

6. We have developed a charming habit of constantly checking GH's eyes for signs of jaundice. So far, nothin'.

7. GH is starting to lose a noticeable amount of weight. He's maintained his weight throughout his illness, but he's down about 20 pounds now. He's just not that interested in food, but he's trying to eat as much as he can.


1. I was an emotional wreck on Friday. Obviously I worried about GH and scared about what's coming our way. I also found out that my best friend's brother and his wife learned at their 18-week ultrasound that their baby has severe brain deformities. They are not fatal, but the extent of the damage is not yet clear. Also could be spina bifida. Fuck. Between being pregnant and already on the emotional edge, this news was very hard for me to take.

2. I became convinced on Friday that GH was not going to live to see the twins. This did nothing for my emotional state.

3. I needed some time last week to just feel sad. I'm OK with this--I know better than to force faked happiness. But feeling sad is really draining and I'm tired. I need to let my mind think about worst-case scenarios. I'm not one to dwell on them, but I need to acknowledge that they exist. That, too, is tiring and tear-inducing.


1. Much that would be considered productive was accomplished. We finished transferring all of our CD collection into our computer, got a custom-framed print that had begun to warp fixed, packed up the stuff in the twins' room that needs to go into storage while the room is being painted, did some yardwork, and hung up two pieces of art in our bedroom.

2. Much that was important to mental health was accomplished. There was lots of sleeping, lots of good food, some time spent napping in the sun, a date at the movies, two favorite TV shows on tape, and just down time together.


1. We bought paint for the twins' room this weekend. It was between Nacho Cheese and Happily Ever After, and we went for the HEA (the orange one on top in the link). How could we resist the name? The room is being painted on Wednesday. Not ideal given that it's new treatment day and I'm worried about the fumes, but we can keep the twins' door closed and put fans in the windows to suck the fumes outside.

2. In the past few days, baby activity has increased a lot. It's fun to feel them moving around. GH enjoys it, too.

3. Twin check-up appointment today at 1:45.

I think that's it for now. The weekend did me good. I am feeling more like myself, although when I said that to the astute GH, he said, "You mean that you're feeling more like your happy self. When you feel sad, that's yourself, too." He's right, of course.


OTRgirl said...

I would say you had every right to freak out a bit. That's a lot of heavy news. It's amazing that he's not jaundiced given all that. Balancing a damaged liver with chemo treatments is really hard.

(OK. That's the 'presentable' version of my first reaction as I read. Which went something like, "Oh shit. oh shit. oh shit!")

Your life is such an intense mix of deepest joy and deepest worry right now! I'll be praying for you...

Yankee T said...

There is nothing more that I can offer than my long-distance thoughts and kind wishes. I know it's so difficult for you right now. Regarding the friend with the sad baby diagnosis, I'll send you an article about that exact diagnosis that ended up to be totatlly wrong for someone. You're in my thoughts and I hold you close in my heart, daily.

Christine said...

Snick, I'm so glad you posted. I was worried when I saw your "bad idea" post. It sounds like there are still treatment options, and that's good. Be grateful for every day you get with him, and pray he stays as good-lookin' as you say. I can't imagine what you must have gone through on Friday. Kudos to you guys for pushing back and enjoying your weekend despite the news. I'll be checking in.

weigook saram said...

I'm so sorry. That's a lot to take.

It sounds like you guys are living in the moment as much as possible. Sometimes I think it helps to compartmentalize and really focus on the here and now. It must be hard to think about the future, but also hard not to, because pregnancy is all about anticipation. I will pray for you.

snickollet said...

Thanks everyone for the thoughts and prayers. They help, the really do.

And OTRgirl, don't worry about being presentable in the comments. I have *a lot* of unpresentable thoughts and reactions! It makes me feel better to see others have them, too.

As for thoughts, I think of all of you often, too, and visit your blogs even if I'm not commenting much lately.

lct said...

Just checked in and saw the additions since Friday. I'm so sorry.

I echo otrgirl's comment about your life being an intense mix of deep joy and worry. My guess is that feeling all the highs and lows must be exhausting. Please take care of yourselves, as much as you are able.

Did you get my email from Friday? I hope so. I was thinking of you this weekend, as I do every day. Please remember that I have a willing ear, should you need a listener.

Much love.

Dorcasina said...

Oh, God. The liver thing is such a horror--and even have lived through some version of your ordeal, I have to say I can't imagine doing it with the emotional roller coaster of pregnancy involved, too. I think that the new drug cocktail is one that showed great promise for my husband; in his case, however, his system was so badly drained by a previous septic infection (ICU for 13 days a few months prior) that he had only one or maybe two treatments with it. But it seemed to have almost instantaneous positive effects--I so, so, so hope that GH will respond so well, too. And he is clearly much stronger and, dare I say, _healthier_, than my husband was when he encountered liver mets.

I don't know what to say, ever; I know there is so much heartbreak in the world, as well as immense joy, and I can't say that I have found any wisdom in understanding how to respond, or what either means for us.

Holding the four of you--and all of us who endure great sadness and celebrate great joy--in my thoughts.

Leggy said...

Just catching up on all my blog reading so am late to comment. I'm sorry that you are going through this. It is so unfair to be be faced with potentially losing him before the babies get here. Of course the whole damn situation itself is unfair, but that just adds salt to the wound.

I hope he responds well to this new protocol and that it buys some time. I'm sorry you have to go through this.