Wednesday, October 28, 2009

Took the words out of my mouth...

My newest best friend I met less than two months ago. We were part of a gathering in Little Rock, AR for the "Big Dam Walk." It was a walk for colon cancer over a big damn. A bunch of past and present Colondar models were in attendance. That included Becca ( Somehow people were just drawn to her...myself included. Anyhoo...she and I were up talking at 3am last night. (A common thing for people on chemo is insomnia.) We are both stage IV colon cancer survivors and we have a bunch in common with cancer, but it has also caused us to think a lot alike.

I didn't know until last night that she kept a blog, too. I read an entry she wrote this week. I felt like I had dictated it to her. Her thoughts are exactly mine. And since she already put them into words, I would like to share: (either click the link to her blog or read the text below)

When you are diagnosed, you have a few choices in terms of ways in which to cope. Among those choices are things like support groups, or networking groups of other people with cancer. In our social-networking-crazed world, its also easy (if almost impossible NOT) to build a community of cancery-people online. All the myriad of websites with message boards, email groups, blogs and of course...the big bad daddy of 'em all, Facebook. Over the years, I've met people who've either been through the same things I have for colon cancer, OR have had various cancers of their own but for some reason or another, we've connected and relate to each other. Sites such as The Colon Club, Imerman Angels, and Planet Cancer to name a few, have allowed me to either reach out to, or be reached by a huge network of patients/survivors/caregivers, etc. Many of these people I keep in more regular contact with via Facebook.
I actually have my "friends lists" in my Facebook broken down into "Colon Cancer People" and "Other Cancer People" and they're both pretty lengthy.
I figured it was healthy and good to have people you can vent to, and relate to in ways you never ever could to even the most well-meaning friend or family member. But inevitably, if you have a network of cancer-folk you will also lose some of those folk. And chances are, lose them to the very thing that you yourself are fighting. No matter how close you were to a person, or how long you knew them, ANY interaction in the cancer world, even a brief one, can form an intense bond.
I've posted on here before about someone I knew and was close to, passing away from her cancer. And in the time since then (roughly a year ago) several others I've met have passed away from it as well.
As of late I've been mulling over whether having this community of cancer-folk is actually a good and healthy thing after all? I recently was in an email discussion back n forth with a handful of other colon cancer survivors (of various lengths of time) and one of them made a comment about how he was glad he was finally getting "past this cancer crap" and beginning to "move on with life". It wasn't a comment directed at me specifically, but at the group as a whole. Many in the group had cancer quite a number of years ago (8, 10, 13 etc). Just those simple comments were enough to simultaneously enrage me with jealousy, and fill me with sadness and resentment.
I would LOVE to be able to get past cancer. I would give anything to be able to move on with life. I don't see how that is ever possible for me however. I mean, yes, I can still do other things and not dwell day to day on cancer, cancer, cancer. I can try my best to not let it consume me every minute of every hour. But ultimately the fact still remains that every day, twice a day, I have to remember to take my chemo pills. And every week, for an hour or so every week, I have to truck myself up to the burbies to get an infusion at my oncologists office. The time in between all of that, I am sometimes lucky to be able to distract myself and not think about my ultimate demise, or perhaps any of the MANY ramifications that come about from having cancer, or being on treatment. Although, successful in that as I may be, I can easily log into facebook or even just check my email and instantly be reminded about it in someway. Some friend will post about how a scan has come back clear! Or another will send a link to an awesome organization we cancery-people should know about. Or maybe there's a fundraiser, young adult cancer-mixer, or a walk/run for awareness we should support. Or...and these are the "or's" you begin to dread: You randomly happen upon a friends profile page in passing only to realize from the comments posted that a person who, not more than a week prior, you were reading about them celebrating a 27th birthday...or who that VERY day you had just addressed a birthday card to send to her, belated of course...apparently just passed away the day before. I don't know whats more sad, the fact that someone you know just died way too young and for not a good enough reason...or the fact that you find out on a website...or the fact that its not all that uncommon of an thing.
I begin to think about how if I didn't know all these people...all these wonderful, amazing, remarkable, hilarious, strong, intelligent, accomplished, loving, kind people...that I wouldn't have nearly as much sadness and sorrow. To be fair, with or without knowing them, I have my fair share of it. But with knowing all of these new friends, I've expanded the potential for grief many times over. So is that good for your psyche? Is it healthy and healing to have to continuously face the end result to things in which you yourself are facing? In the same respect if I ignored all these new friends. If i disassociated myself from all the organizations I've connected to that do so much towards that any healthier? Would denial be any better of a way to cope? Common knowledge would lead me to think no. But I would be remiss if I did not admit that I don't always believe common knowledge knows what the hell it's talking about!! Of course, ultimately, there isn't a right or wrong answer. However, I'd love to hear others thoughts on this matter.

Tuesday, October 27, 2009

What to wear for Halloween...

Well, I got the results of my CT scan yesterday. It wasn't the shrinkage I was hoping for. Instead the tumors have grown...just slightly, but still. Also, there are a couple more. None of this is great news. But it's not a disaster. I have options.

One of the options is a clinical trial. This particular trial doesn't have any data to go by other than it worked in testing on animals, and they figured out the dosage needed. So I'd be stage three of the trial. The good news is that this combo of drugs doesn't seem to have any side effects. And I'd only do it for two months and then we would scan. If it isn't working, I could try the next option.

Another option I have is the drug treatment I was on after my surgeries. That "seemed" to work, but who really knows. The surgery removed the tumors and the chemo simply kept it from coming back for a year. But were things just starting to grow from nothing while I was on it?

So which do I choose? I wanted my biggest decision this week to be my Halloween costume, but instead I have to choose a drug that might work and save my life. I can't wait until the day when "What should I have for lunch?" is back in my thoughts.

I'm still here, so "We have one more game!"

Monday, October 19, 2009

Colondar sales...

I gotta say that I think being on chemo is a great marketing idea! My goal is to sell 300 Colondars and I'm at 220, now. But, now is the tougher sell. Most people I know who want one have already bought one. If you are one of those people who want one, but haven't told me...then let me know! Eighty to go!!!

The money goes for a couple of things...colon cancer awareness and also to support the next Colondar. Being part of the Colondar has helped me SO much. Three weeks after meeting all these people who have been in my situation, I was diagnosed with my recurrence. I can't tell you how much that has helped me. So, I'm asking you to help me help someone else. If you are looking for a holiday gift, Colondars are great!

Friday, October 16, 2009

Kind words...

I get very nice email notes from time to time. I thought I'd share a couple I got this week. Obviously, they made me cry. I cry at Campbell's soup commercials, for crying out loud!

Hey, I got my calendar and visited your blog. I was really charmed, moved, entertained, saddened, inspired, etc. by all you write and have written about your experience. You really are such a gift to the earth. I mean that. People with your fortitude and strength of character are rare. GO, FIGHT, WIN!!!

Now you are not only our hero but our celebrity too. Its a cool Colondar and I will be showing it to my doctor. You keep up the good work, we are in it with you. We tell all of our friends about your strength and resolve, your positive attitude. Guess you're just one special Dude. We are proud of you.

Wednesday, October 14, 2009

Worrisome things...

There are a few things I've noticed lately. One is that my hair is growing back on my head. Another is that the rash is getting better. Both of these things worry me. If the chemo is not causing my hair to fall out and it's not causing a rash, then is it working on the cancer?!? I have a CT scan on 26 October to find out.

On the other hand (or leg), my leg hair is falling out. I'm bald on my knees, thighs and calves. The rest of the legs are hairy. I feel like the GEICO caveman. Well, I guess any, old caveman. I'm just picturing one wearing modern clothes.

Either the open pours from the hair loss or the dry skin from the one chemo drug is causing pain. It feels like sunburn with every step, as my pants/jeans rub against my legs. That's a boat-load of joy!

Friday, October 9, 2009

I'm not normal...

My doctor said that I'm not normal. (Frankly, I'm surprised no medical expert has said that in the previous 39 years.) He didn't say it in so many words. You see, I had my routine oncology visit and while we were talking, he had this puzzled look and asked, "did you SHAVE your head?" "Yeah." "Weird. None of my other patients on (my chemo) have ANY hair."

Actually, in the past two weeks I've notice my hair seems to be coming back. And it's black!'ll be curly and I'll have an afro. If so, I'm going to grow it high and do a "Kid and Play" haircut!

The doctor went on with our typical questions. "So, how much Imodium are you taking?" "None." "Really?" So, I have Crohn's Disease and colon cancer, plus I'm on chemo and I don't have excessive diarrhea any more. I can vouch that I'm a weirdo! Well, maybe this is deceiving. I've had Crohn's for 20 years and diarrhea was the norm. So, what most people consider a problem while on chemo, I might be used to. Who knows.

One side effect I am starting to get...extremely dry skin (which leads to that rash). But lately it's been dry arm. The skin hurts to touch around my triceps...feels like sunburn. And the skin around my elbows is turning into "old man skin" as my cousin says. I'm wrinkly! So weird. Yes, I'm a freak! :-)