Archive for July, 2009

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The Port Tan

July 29, 2009

I have captured a new look in Chemo Chic. The Port Tan. Those of you who sport an unintended Farmer Tan or any other white on tan pattern that doesn’t exactly jive with your clothing lines can understand.

Back on the 5FU, I had forgotten that “sun sensitivity” thing and didn’t lather up before I walked two blocks to the train on a cloudy day. My pasty white Irish skin was now that blush pink that makes you look constantly winded and flushed. But what really sealed the deal, was a v neck shirt at an outdoor event with my port peaking out reminding everyone that I’m toxic. “Screw it. Let ‘em see!” I thought. Until I got unhooked from my pump today.

 Now my décolletage is a paler golden color set off by a giant glaring white square just below my right clavicle. It is nicely trimmed in a pink halo of irritation from the adhesive and has already started picking up lint from my shirt for added texture and color. Yes, this is The Port Tan. A stylish square brand that says, “Hey look! I could be even paler!”

 The bright side of all of this is; I’m actually outdoors. Doing stuff. Which is mostly better than sitting on my damn couch, popping narcotics and watching cartoons. Mostly.

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better days

July 9, 2009

Hi gang!

What a difference a few days can make! Today I spent a few hours working at UIC, did a bit of grocery shopping, met my pal Jess and Marc for dinner and started laundry all by myself! I had a good 2 hours on the train, and while my eyes did water a bit , it was just because of the smell of a homeless guy next to me and not tears.

My “fake patient” job at UIC is a great outlet for me right now. I feel like I’m giving back by helping train doctors and making them more aware of their beside manor and compassion. I get to act and go somewhere else mentally for a few hours a day, while still earning a bit of cash. The part where I have to wear a hospital gown is kind of a drag, but I am a pro now in tying and draping those things for maximum coverage. Mostly, its nice to be actually doing something and contributing to society; not to mention our household income.

Speaking of cash. Some incredibly thoughtful friends have created a website to raise funds for my medical expenses and ongoing care. I am both touched and grateful for the outpouring of kindness and support. Take a look at the site here  if you like. I am overwhelmed by people’s generosity. I can’t tell you how wonderful it is to have the freedom to just order pizza, when Marc and I don’t feel like cooking. Or to stock up at Target on jumbo sized paper towel packs and detergent so that we don’t have to spend all of our time together running small errands. I’ve even got a cute, red, rolling grocery cart on the way to help me with day to day shopping. All of these things make our life just that little bit easier, but it makes a huge impact overall.

Marc and I are also going to open a special savings account to store contributions toward my ongoing care. I am keeping an eye on clinical trials and new surgical procedures that may require out of pocket expenses and/or travel. Again, it is just such a wonderful feeling to know that I will most likely have the freedom and resources to pursue this kind of treatment. Thanks to all of you, I have the luxury of just focusing on me and my eviction of these tiny invadors. It still sucks to have cancer, but I couldn’t ask for a better crew of folks to help me kick this thing’s ass.

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chemo plan, tub retreats and the occasional weep on the bus

July 8, 2009

Hey there!

Sorry I’ve been a bit incommunicado. I’m just having a couple of really rotten days in a row and didn’t feel like doing much of anything other than sitting in the tub or doing crosswords. I’ve also been a bit weepy for some damn reason when I talk on the phone, so I’ve turned the ringer off my phone. I dont really feel depressed or anything; mentally I’m actually as ok as can be reasonably expected, but I feel a bit wacky in the hormonal dept. Weird.

Anyhoo – I did meet w/ Dr. Fab Shoes and she laid out for me the chemo plan. Its almost identical to what I did before, so I’m not really scared or freaked. Difference is the oxiliplatin that gave me all the neuropathy and cold problems has been nixed and a new one called Erbitux ( I think) is probably swapped in. The docs actually have to do some kind of test on my tumor to determine which one. (Yes. They still HAVE it. My ginormous ovarian blob is in a freakin jar or somthing somewhere at NWMH. How creepy is that?!?) As for side effects this round, I am more likely to lose my hair, but its not a guarantee that I will. She just wants me to be prepared. Likewise, a lot of folks develop an acne like rash on their face, back and or chest. Some people get it very mild, others its pretty nasty. I guess I just have to see where I fall. But they have a dermatoligist on staff whose whole entire job is to deal with patients who have side effects from this one particular drug. (Talk about specialized!) Other than that, its the same every 2 weeks I go in, drippy drippy for 3 or so hours, and then go home with the fanny pack of the infamous 5FU.

The docs are also really trying to help me with my mysterious digestive problems and giving me some new things to try, plus a meeting with the dietician. I finally feel like they are taking this thing serioiusly, so I feel more at ease there. Working theory is that these evil little tumors sprinkled about my peritonal wall may also be peppering my bowels. It only takes one tiny guy to sit on a nerve or something to cause irritation and discomfort. Unfortunately, like I’ve mentioned before, they can’t SEE these mofos. So its still just a guess. No matter what, the treatment to deal with these bastards is chemo, so the hope is that chemo will shrink and kill these guys and I’ll get some relief.

There was also mention of a clinical trial that doc might get me in on. If it is ready to start in the next week, she’s gonna give me the skinny on it and see if I wanna participate. However, I’m anxious to start treatment and there is some sense of urgency on the doc’s side that I get going quickly as well, so unless this one is all set to rock n roll like next week, I’m gonna skip it.

Likewise, there is a newish surgery out there that actually removes these tumors from the peritonal wall. The docs call it “shake n bake”. (nice, huh?) Basically, they open you up and scrape off as much of a layer of the peritoneal wall as they can, then they pour a chemical chemo liquid along the wall and coat your guts with it. NWMH doesn’t actually perform the surgery at this time and Dr Fab Shoes thinks the results are still too mixed for me to consider it just yet. She has refererd some other of her patients to another hospital for it (MD Anderson, I think) but its her opinion that chemo as a first line of attack is better. The up sides of this surgery, when it goes well, is that you are indeed cancer-free. And many people recover well. The down side is that many people recover pretty poorly, with enormous amounts of pain and a lot of general desenitization. (not enjoying food, activity, etc). I agree, that this isn’t right for me at this time, but its comforting to know that this procedure exists. My hope is that the technique will continue to improve and that should I need it someday, it will be less risky.

As for “how am I doing?” well, honestly I’m a bit weepy here and there. Whenever I get in the shower or, oddly enough on the bus, I get teary. (Granted, my local bus is enough to reduce a healthy person to tears, but I digress.) Seeing the docs with the “Pallitive Care” titles in my room was freaky and I actually feel like a sick person on occassion which really starles me. However, I think the blubbering is probably good. Its the first couple of days I’ve had time alone, so its not exactly unexpected, and I do feel a release everytime it happens. Its mostly frustration filled and not a profound sadness, so I think my noggin is just clearing out the leftover angst and trying to move forward. I really truly believe that things will get better and this is just a more than reasonable funk I need to kick over the next few days. I’m going to my support group tonight to get some quality time with my tumor peeps which should help, too.

I have a high school speech/theatre reunion this weekend, that I’m actually looking forward to. I think it will be fun to see my drama nerd pals and NOT talk about cancer for a while. Likewise, I do want to get some fun scheduled asap. I really want to go to some outdoor concerts, ballgames and horse races and stuff, so I’m scoping the various calendars and figuring out what we can swing financially and what jives with my energy level. Today’s project is pork shoulder in a crock pot. I’ll kepp you updated with other lofty goals as they develop.