Sunday, September 21, 2008

Touching the Void

We met with the oncologist, David Ryan, on the 15th. All I can say is, I much prefer the company of gastroenterologist -- they are a downright jolly crowd by comparison. But that is a post for another day.

So here is the scoop -- there were cancer cells in my lymph nodes. Not good. I had a baseline CT scan done yesterday. I am having a porta-cath placed under my right collar bone on Wednesday. And I will be starting chemo on Friday, October 3rd. It will be a combo of Oxaliplatin and Gemcitabine. According to Dr. Ryan, the side-effects should be mild-to-moderate. This isn't the hair-falling-out, vomiting everywhere kind of treatment, but I still am facing extreme fatigue for the first few days (we are planning on me getting chemo on Fridays so I have the weekends to recover) and flu-like symptoms (chills, aches), as well as numbness and tingling in my hands and feet and it could possibly put me into menopause. Permanently.

I'll be receiving chemo at MGH every other week for six months. And I'll be having CT scans every two months to make sure it is working (i.e. the cancer isn't popping up somewhere else in my body).

All this news was... deflating. I wasn't prepared for such a long treatment. And the fact is, six months is the optimistic outlook. Add to it the complete alien nature of what is about to happen to me, and getting through the next few weeks, until the first chemo treatment is behind me, is daunting. I feel like I'm in a foreign land, don't speak the language and am blindfolded to boot.

Thursday, September 11, 2008

I'm So Tired

My friend Lorelee has a fabulous sense of humor. It is, in fact, just like mine! Jokes and puns are not lost on her and she can volley right back with the best of them (and I count many of them amongst my friends. I run with a silly pack.)

When either of our Misters really start to whine about how hard a day they've had, or how tiring working full time and commuting is, one of us will start singing "I'm so tired..." a la torch singer Lili von Schtupp in "Blazing Saddles" and have the other one laughing in no time. We figure that since neither of us eats until naptime, or gets to go potty alone, and our bosses are complete tyrants who can go from zero to temper tantrum in 4.3 seconds, we are completely justified in our spousal mockery. And besides, it's just plain funny to sing, "...tired of pwaying da game..." Really. Try it some time. It's good for you and calorie-free. If you have a feather boa, all the better.

Needless to say, I can now lay claim to a tiredness I never could have conceived of. This beats 1st trimester, C-section with a 3 year old and a newborn, 20-mile walk for hunger, hiking in a frigid downpour in the Whites in October -- by a mile. I have a stool in the shower so I can sit while bathing. I need to nap after said shower to recover. I get tired eating a bowl of cereal. Watching TV is exhausting. The fact that it is an election year and we are now into football season and baseball season is enough to make my brain melt.

But saddest of all, knitting is tiring. This is a complete heartbreaker for me, as I had hoped to churn out FOs (Finished Objects for the muggles!) like no tomorrow. I still have a second Jaywalker on the needles, and find myself deep in the grip of SSS -- Second Sock Syndrome. I'm plodding through, but the first one I finished in no time -- nervous energy leading up to the surgery and lots of trips between home and Boston.

I am thrilled with how the first one turned out. This is my Neverending Sock Yarn (3-ply merino superwash) in my Fawkes colorway. The fit is absolutely perfect and bad me -- I never did a gauge swatch. I just cast on and ran with it. Such a rebel, I am!

I cast on the a February Lady Sweater recently too, and that is languishing a bit. It is going to be a lovely blue cardigan to keep me warm this winter, but at the rate things are going, it'll end up being little more than a lap warmer. I'm going to need it, too. I've heard that liver resection patients usually run cold following their surgery. This would be a first for me -- under normal conditions, I can throw off more BTUs than you could shake a stick at. Are there sweeter words for a wife to hear at night than, "you're too hot." I think not.

Sunday, September 07, 2008

Shark Bait

I figure some of you may (or may not) be curious as to exactly what was done to me. Here are some of the stats:

Sixty percent of my liver -- my entire right lobe -- was surgically removed, along with two lymph nodes that were enlarged. Those were the ones my surgeon, Martin Hertl, could visualize. My common bile duct was also removed, and my left hepatic duct was connected to a loop of my small intestine. This is called a hepaticojejunostomy. My friend Shelley thinks this would make a dynamite National Spelling Bee word!

Personally, I think that Dr. Hertl, who hails from Germany, put on his lederhosen and performed a Bavarian shoe-slapping dance in my guts, but that's me.

My scar is roughly eight inches long, and starts just under my sternum. The remains of Hurricane Hanna blew through last night, and in typical barometric style, my incision/scar nearly drove me batshit. How can something be numb, ache and itch all at the same time? And since it still has about 3,285 steri-strips on it, and is only two weeks old, I can't even scratch my itch. Maddening.



There is some good news in all of this. I saw Dr. Hertl on Wednesday, and he declared me 99% cancer-free! He demurred about only being the surgeon, and that the oncologist could give me more details, but he was very optimistic and brought up again that he has a patient who had the same course of treatment and is still doing well five years out. Five years is not enough for me -- I am thinking more in terms of decades. I have no choice. Five years from now, Anneke will be 10 and Fritzi the Wonder Boy, will be 7. And I will still need to be here and be well. The doctors and the cancer have no choice but to bend to my will and just go away and stay away.

Friday, September 05, 2008

The C-word


I'm not talking about the one that will end a relationship if uttered by the man involved; the one that can send any well-grounded, rational woman into a lunatic rage. The c-word in this instance is cancer.

I found out on August 5th that I had three lesions in my liver -- the result of a routine MRI that my hepatologist, Dan Pratt, had me do. The results came back while he was on vacation, so one of his colleagues, whom I'd never met in my life, got to give me that bit of info. Not fun for either party, if you ask me.

Needless to say, everything else in our lives came to a screeching halt as Mr. Spiffy and I had some decisions to make in a hurry. I gave myself over to the Worst Case Scenario for that first week and wept myself limp, thinking of my babies being motherless. The thought still just about makes me vomit.

Once I purged myself of such thoughts, I gave myself a swift boot in the ass and decided that that can't be me; that simply isn't who I am and how I am going to go. Still, telling friends and family that I have cancer was eerily familiar to when my dad was diagnosed 10 years ago. Hearing my mom say it over and over, it felt like the first time every time. The reality of the situation and the surreal nature of the words uttered made me feel like I was losing my mind.

From that point, things happened at an alarming pace: Liver biopsy on August 12; met with the surgeon on August 18; surgery on August 21.

The most remarkable thing that happened in all of this -- we met with Martin Hertl, the surgeon, on the 18th, and he told us that he had the OR booked for the exact surgery/time I needed on the 21st. Another patient of his has the same condition I have, but is, "in denial and has decided to postpone it." Since he knew we were coming in, Dr. Hertl instructed his assistant to keep the time booked, "just in case."

After talking with him for just a few minutes, I would have agreed to just about anything! Such a pleasant, reassuring person. Mr. Spiffy and I both agreed to doing the surgery ASAP. While it meant scrambling to get things taken care of, it meant getting the cancer out as soon as possible too. And when a cancer goes from just not being there to 3-4cm in four months, there is no hesitating. Unless you're nuts, or you have a death wish.

So, I am now two-weeks post-op. I really don't want to revisit my time in the hospital here. It hurt, it was really hard, I was up and down -- mostly due to being pumped full of drugs, I think. Normally, I take the occasional acetaminophen when I have a cold or headache, but otherwise my drug of choice is caffeine or chocolate! I came home with eight prescriptions. Ugh. I am back off most, and am just taking pain meds so I can sleep. And lots of help, since I am not able to pick up anything heavier than five pounds. Try that with a five-year old and a two-year old (who weighs 28 pounds and is still in a crib -- yeah, right) in the house. I can't even make myself a cup of tea, for the love of Pete.

And we have a long way to go before life will even begin to be normal. I've been exhorted to eat; to make it my job. Trust me -- it feels like one at the moment. Food tastes weird, my appetite is just not there. I get tired from eating. I get tired from everything, actually. Having 60% of your liver removed and then growing that amount back is exhausting work. This makes a c-section and caring for a toddler and a newborn feel like a cakewalk. I would have much preferred that to this, but I don't know if Mr. Spiffy would agree with that!

Once I am recovered from surgery, then we will get started on chemo. Yet another c-word, and this one strikes terror in my heart. I've had lots of unpleasant things done to my person over the years, but this is something I dread. I think my lack of knowing anything about anything is what has me a bit freaked.

The picture is my nighttime reading these days. I can only handle a page or two at a time -- I'm still really foggy from anesthesia -- but I need to educate myself in a hell of a hurry about a lot of things. And I need to keep knitting. I've never been so happy to have such a lovely creative outlet and be in the company of such generous folk. But this is all I have steam for today. Next post -- more recovery news, knitting updates and the generosity of friends and strangers alike...