Archive for June, 2009

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What’s next?

June 25, 2009

My release from the hospital actually went as planned (just so you know I do some things in regular fashion) and I got to sleep in my own bed Sunday night. My great pal Mandi transported me, Marc, my Mom and a freakishly large suitcase back home where Marc had spent hours cleaning and organizing for our return. Mom got settled in to our guest room/office and we set out on figuring how to live as Man, Mom in Law, and Druggy Gimp for the forseeable future. Words have been exchanged and toes were trodden, but there have also been laughing fits, nice meals, and crossword puzzle management to fill our time together.

I know most of you are interested in the WTF part of my last post, so I’ll dig right in. As I mentioned, cancer was discovered in my peritonal wall and it is impossible to treat surgically. I learned that there is no scan technology available at this time to see these kinds of tumors in this specific area, so no errors were made. Obviously, my docs would have never sent me in to surgery if there were a way to detect this type of cancer from the outside.

Docs have explained that chemo is now the best option for treatment. It is a way to manage these tumors and ideally shrink them or at least keep them from growing or spreading. As you all know, I responded to chemo very well last time and did not experience a particularly difficult time with side effects. It wasn’t exactly a cake walk, but it wasn’t horrible.

The big hurdle here is that my planned procedure had been a possibly “curative” option. In other words, that surgery had the possibility of removing all of the cancer from my body and possibly eliminating it long term. My current situation has no “curative” option. My cancer is certainly “treatable” and even “manageable”, but anything that looks like total remission or a cure is not in the picture.

So, this is not great news. Not gonna sugar coat it. However, cancer really doesn’t have a true “curative” option for anyone in the big scheme of things. I knew from the day I was diagnosed that my particular strain of colon cancer has a very high reoccurance rate and that it would likely be a challenge I faced on and off for the rest of my life. In fact, 5 or more years ago doctors didn’t have any effective treatment for a gal in late stage like me, so I’m grateful for all of the technology I’ve benefitted from in just the past year.

Chemo it is. Dr. Fab (my oncologist) explained to me that cancer will now be a chronic disease I will manage, like other folks who deal with diabetes, heart disease, etc. It takes vigilance on the dr’s part and some lifestyle changes on mine, but there is action that can and will be taken. Dr. Fab explained to me that she can actually keep me on chemo indefinitely and that she has patients who have been in ongoing treatment with her for years and years. I have met a couple of her patients who have been in chemo with her for 2 + years and honestly, they don’t look bad. They are both older than me and seem very put together and used to the routine whenever I see them. I have a model for how life can co-exist with treatment and it’s not just barf buckets and head scarves.

I didn’t get to chat in detail with Dr. Fab about my drugs or frequency of treatment etc, but I have an appointment to discuss all of that in two weeks, once my belly has healed up and I can better take a chemo punch. She mentioned that she is cheffing up a totally new combo for me that will probably not include Oxiliplatin. (the drug that gave me the freakish sensitivity to cold) Reality is, I live in Chicago and that won’t work for me long term. Its details like this that make me feel confident that we can create a plan that provides treatment strong enough to keep my cancer at bay and still keep a manageable quality of life.

When you ask “How are you?” I know you aren’t really referring to the pain, but more my mental game. Of course I would have rather the surgery went as planned and I’d be anxiously awaiting my next scan. But you know what? Now I’m going to start chemo and spend time anxiously awaiting my next scan. That part never changes for a cancer patient and I got used to it a while ago. I have friends who get scanned every three months, never knowing if their life will be upended for another 3 months while they do their 5th, 7th, or 14th surgery. While indefinite chemo blows, at least its predictable. I will eventually figure out my rhythm of good and bad day cycles and discover new hurdles, but its not a complete drop from society with little warning like surgery. I’m not naive that my life or “new normal” won’t have some limitations, but I’m pretty sure I can take it. And if treatment starts to really make me miserable, that’s when I chat with Dr. Fab and we make adjustments. I always have the power to say no to anything that makes me feel truly awful.

I would like to point out that progress in treating cancer is made everyday. There could certainly come a day in a month, a year, or more that a surgical “curative” option may become available. We plan to stay updated and condsider this and all other developments that come along, without making ourselves crazy chasing lizard pee elixirs from Peru or magnetic underwear.

I view this new development, not unlike my diagnosis. Its just one of those crappy bad luck things that sometimes happens to people and this time it was me. I quit pondering words like “fair” a really long time ago because I find it completely unproductive. No one “deserves” to get cancer. Its not “fair” for anyone to be challenged by such a montrous disease, but I am, in this specific way, and we move on.

I’ve seen every episode of The West Wing and I’ve always loved President Barlett’s use of “What’s next?” There’s a hostage sitaution in the US Embassy in Columbia? “What’s next?” Call in the military big wigs, get advice, create a plan, and make it happen. There’s no wringing the hands over what we can’t change, no rehashing to determine cause or blame, no stewing over how we will ever go on. Just get information, evaluate, and take action. And when the crisis is contained, “What’s next?” because there is always something new to be dealt with. Pointing fingers or asking why gets you nowhere. It just keeps you from enjoying and living in the here and now.

What’s next for me is chemo. And Ravinia picnics. And a 50th marathon celebration with Sue in Vegas. And pork chops.

See ya there.

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You found what?!?

June 21, 2009

Hi all!

 Beefore I explain why I only sort of had surgery, I want to thank everyone for their well wishes. I have had an amazing outpouring of support and kindness that I’m not sure I’ll ever repay properly, but I promise to try. I have the best friends and family a girl could ever wish for. I am truly humbled.

So…once again, I wake up from surgery to get a huge suprise, and not a good one, like cake. Once my surgeons opened my abdomen they started scouting tissue and discoved a bunch of very tiny tumors in my peritonal wall. Luckily some drs were on hand to explain to me exactly what my perintonal wall is. Basically, all of your organs are kept snug in this thing, a sort of giant membraney sack. Tumors here are unreachable surgically. The only real way to treat them is with chemo. So, knowing I had to do chemo, the docs decided not to strain my bod by removing the liver lesions. It was their opinion that is was best to let me heal up asap and get into chemo sooner than later. Mission aborted; closed up shop.

I did get to avoid time in the ICU though and my recovery has been pretty speedy so far. They removed my incision dressing, epidural and catheder today and I took my first full lap around the floor today with Jessica and Marc. (Totally stylin in my awesome custom hospital gowns crafted by friends Darcy and Kay. Huge envy all around.) I also got my first bit of solid food since Tuesday. Underripe honeydew never tasted so good.

As always, the big indicator of when you can be discharged is when you begin to pass gas. All the freakin technology in the world and they still have to conduct a giant Fartwatch to confirm that your bowels are functioning on their own. I finally let one around 4:30 today and there was much rejoycing.

I’m not in much pain unless I cough or laugh really hard(pulls on my incision)so no wisecracks unless they are really really funny and worth the big ouch. Up until today I was enjoying the epidural and a delightful Dilaudid drip. Now I have Norco in pill form and shots of something that sounds like “Toreador”. I was pretty hopped up when they told me what it was, so I asked if it was “strong like bull”? My nurse totally didn’t get it. Crickets. Oh well, not all of my material is good. Turns out the stuff is really called Torador (or something like that) and its really strong. Only hitch: it totally burns like eternal damnation going in. Yes, my pain medication, really HURTS. Oh, the irony. Luckily, my nurses have found a way to dilute it and administer the stuff in a less painful fashion. Yay.

Provided that I behave myself and nothing wacky happens (I don’t rule out suprises anymore), I’ll see the doc during morning rounds and get the discharge orders and instructions for home. Mom is going to stay with us for a while, until I’m up on my feet with a bit more confidence. So – that’s the plan.

I’m sure you all have questions, not the least of which is ‘Why the *&$# didn’t they see these tumors before?!?” Yeah, I had that question too. Jeez they’ve scanned every inch of my body – where did these guys appear from? And, what’s the treatment plan from here etc. I have answers to some of these questions and will update you more in a few days. I need a bit more time to process everything and let it sit in my head before I get words and thoughts in order. But, I will give you a more detailed plan soon.

Know that in the big scheme of things, I’m in a good place mentally. I feel strong and ready to continue my cancer smackdown via Plan B – whatever Plan B turns out to be. or b. or…nevermind. (Apologies – I’m on narcotics)

much love to everyone,
Chris
 Tumor Assassin in Chief

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noted…

June 14, 2009

Just a few things I have discovered.

As recommended by Amy Sedaris, many narcotic pain meds do, in fact, fit neatly into PEZ dispensers.

stewieFamily Guy has not yet liscensed any of their characters for PEZ, but I expect anyone who loves me to send me a Stewie Griffin dispenser if they ever find one.

 

Seven months out of chemo, the following things are still difficult due to neuropathy:ribssilverskin
putting on earrings
opening vacum sealed bags of chips or coffee
removing silver skin from slabs of ribs

That is all.

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a kernel of wisdom

June 10, 2009

One of my awesome cancer peeps shared something with me about barfing. I was crazy lucky that throughout chemo, never once did I hurl. She was not so lucky and barfed a lot. Got to be a pro, in fact. So, for those of you currently living the chemo life, I offer this tip:

No cilantro. No corn.

When you get a powerful chemo puke going, stuff can get propelled into your nose and stick there. The two things that are the most difficult to dislodge from your schnoz are corn and cilantro. Especially if the cilantro is whole and still on the stem. So avoid them in your diet during barfy phases.

No corn. No cilantro.

That is all.

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designer and DIY hospital gowns

June 8, 2009

I  had a horrible creepy thought about hospital gowns. It occurred to me that people die wearing them. And my guess is that the dead people gowns just get washed and thrown back into the mix. Eeeeeewwwww. So, I went in search of snappy fun and decidedly less death tainted hospital gear.

Indeed, there are tons of folks who make super cute, if not overly precious, hospital gowns for preggers gals. Etsy is filled with such things, and they come with a hefty price tag. But, how bout us gals who aren’t knocked up and flush with cash?

RasperryBee makes nice ones with designer prints from Lily Pulitzer, but be preparedto shell out $70-$100 + shipping. Here’s another site that makes fun gowns in a variety of patterns, suitable for men and women, with lots of stuff that would make your Grandpa or outdoorsy Dad smile. And each one comes with a matching surgical cap. Still pretty pricey though.

So, I was delighted to find LazyGirlDesigns who offer a FREE pattern that you can download to make your own fun sick bay gear.

Luckily, I have a great friend who is also a kick ass costume designer and masterful self-proclaimed “Stitch Bitch”. She graciously offered to craft a few for me and took me to a local fabric store to pick out some fun prints and funky buttons. Here’s one:shoesfabric

 

Super cute, right?

Total cost per gown for me in super cute fabric, including all supplies? About $20. Not including the nice bottle of wine I intend to buy for my sewing superstar.

Now to round up some matching slipper socks and hair ties. Everyone else on my floor is gonna be poppin Ativan by the handful to deal with their feelings of jealousy and admiration of my snappy sick duds. Yeah, baby….

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Iron Chef Battle : Liver

June 6, 2009

As I have previously posted, next up in my Cancer Smackdown is Iron Chef Battle: Liver. I have 2-3 pesky lesions that don’t want to leave. Not that I blame them; I imagine my liver is a tasty place to reside. However, the time has come for them to be evicted from this very important organ.

I’ll be checking in to Northwestern in a couple of weeks for the big day. They tell me I’ll be in ICU for 1-2 days, then a regular floor for an additional 3-5 days. Doc has promised to consider transfering me to Prentice after the 1st day or two so that I might enjoy the schmancy flat screen and superior tea and smoothie menu for the rest of my stay. I plan to bribe him with contraband baked goods provided by my crafty girlfriends.

The basics of my surgery are as follows: No dice on laproscopic this time. My two surgeons need to open me up to get the best angle on the pesky lesions. Scalpel doc will be resecting (cutting out) the problem child tumor near the portal vein. Laser doc will be ablating (burning) the smaller surface tumors at the same time. I think of them as Hans Solo and Luke Skywalker, Luke being in charge of the light saber.

Team Chemo and Vino (my hubby and pal Jessica) will be engaged to keep everyone informed as to my progress and anything really funny I might say while under anesthesia. Husband and Jessica will also be Bloggers in Chief and posting updates at some point.

In the meantime, I plan to be shameless in taking my pals on offers of help and support. I plan to organize another “Feed the Blumers” schedule post-surgery, for my foodie pals in Chicago. A HipCal schedule for my pals to bring us dinner was a huge help last time around – thanks Jessica! For those who are not kitchen inclined or out of town I am shaking down friends and family for gift certificates for basic essentials. As much as hubby and I are blessed with great insurance and secure employment, the cost of incidentals adds up quickly. (The discounted parking at Northwestern is $10 for 7 hours, $20 for 24 hours. I’ve been spending $100-$150 a month in parking alone for treatments, tests, and doctor visits.) Gift cards for Target, Jewel (our local grocery stores) or cleaning services helped a ton during my last surgery. Anything to make hubby’s life easier while he deals with me on various narcotics is a good thing.

I have also pointed out to my non-tumorous pals that a medicinal marijuana bill recently passed the Illinois senate, so now would be a good time to suck up to me. I don’t think you can fake Glaucoma. I’m just sayin…