Saturday, June 9, 2012

June 9

I've had a lot of great conversations in the last 24 hours with people whom I love.

I tell you, this is what I love about the cancer... the people who come right out of the woodwork when they know there's something new and/or major on my cancer-fighting horizon. (Keep in mind that there is very, very little that I love about cancer. But this? This outpouring of love and support? ... This, I love.)

In my many conversations, there have been certain themes... Common questions have been asked, if you will, and I want to take a moment and address those. You know, for the two or three of you who read this blog, but may not have had time to call/text/email or FB me today.

Q: Will I really never be able to drink Coke again?
A: It's very possible. ... This is why: while Coke is a refreshing and delicious and is seen by many (myself included) as a viable beverage option, it really has no nutritional value. In fact, it sort of has the opposite of nutritional value. (Some of you will be shocked to learn that I was aware of this, I know.) While it is certainly delicious to the taste, and I can suck down 32 oz in no time at all, it doesn't actually hydrate a person. And when I morph from the Cancersaurus that you see before you today into The One Kidneyed Wonder that I shall become in approximately two weeks' time, I'm going to have to focus on the hydration. Dr. Dreamy tells me that I'm going to have to commit to eight 8 oz glasses of water a day. For life. Or else. (We didn't really discuss the "or else" part of the equation, but my best friend is a dialysis nurse and I know enough about what she does to scare the the bejeezus out of me.) I can give up Coke if it means that it will decrease my chance at ever having to have my blood cleaned by a machine. Not a problem. ... And I really, truly do love water. So, it won't be that bad.

Here's a fun fact: Aleve and Advil are no longer medication options that are open to me. It has something to do with only having one kidney. ... I didn't really get why I'm not allowed to have either of them, but it was drilled into me good and hard that I am not to take anything other than Tylenol for a solid week prior to surgery, and I need to steer clear of them in the One Kidneyed future, too.

Q: Are they really taking your spleen out?
A: Yes. Yes, they are.

Q: What do spleens do, anyway?
A: The spleen produces, monitors, destroys and stores red blood cells. It also helps your body fight off infectious diseases. (You can read all about it here:

Which brings me to one of the weirdie moments of my dr visit yesterday. Apparently, since I'll be spleen-less, I need to be vaccinated prior to surgery. Yeah, vaccinated. Like a dog. At the pound.

(I used this dog/pound analogy when I was talking with my friend Kimmie this afternoon. Her response? "Or... like my babies!" ... Oh, yeah. Babies get vaccinated, too. I forgot. ... This would be one of those moments where it becomes all too clear that, while I have adopted pets from the Humane Society, I've never had children, so my vaccination frame of reference can get a little skewed. At any rate, I'm glad that Kimmie reminded me that people get vaccinated all the time. I'll try to stop feeling less like a stray dog and more like someone's precious little bundle of joy. Stat.)

Q: Am I really considering an epidural?
A: Hi, have you met me?! ... I'll consider any and all methods of anesthesia. I. Hate. Pain.

Q: Have you considered medical marijuana?
A: No, not really. But only because there's no real need to go there at this point. The doctors will give me high strength pain meds to get me through surgery recovery (this I know). Two of the major benefits of MM include pain management (which I'll already have taken care of) and help with nausea (I have pills for that, too, actually). There have been some studies that show that MM can help decrease the growth rate in tumors, but... those studies, once again, don't include liposarcoma tumors. Gosh, I love having the rare cancer/freakshow tumor that doesn't respond to much of anything.

*Disclaimer: If I were to ever go the MM route, I'd do the pill. No way would I smoke it. The smell is offensive to me. Oh, and I wouldn't want the college kids across the way to think I was having a party and invite themselves over.

While we're talking about my tumors not responding to much, I am feeling the need to break the Q&A pattern and dish some new intel I got on liposarcomas yesterday. Get this. We've talked about how liposarcomas don't respond well to traditional treatments (radiation and chemo), but yesterday, Dr. H went into a little more detail and gave me some hope that there may be treatments available to me at this point, should I have another recurrence after Dr. G basically guts me. It seems that research has shown that liposarcomas, in their beginning stages, don't respond to chemo based treatments, but... as the tumors recur and start to get more aggressive, the cell make-up changes, and they're seeing that those more aggressive tumors DO respond to chemo, because they've turned into fighting cells, and aren't just weird little baby cancer cells anymore. Soooo... one of the things that the pathologists will be looking for, esp on this new little friend, will be the mutated/aggressive cells. If I'm now producing a stronger, more aggressive tumor, it could open up an opportunity for treatment options (v. surgery, which is the only option I've had thus far), should my body continue to grow tumors even after they take all the guts out of the left side of my body.

*Disclaimer: Please do not read that I am expecting the cancer to come back after this surgery. This is not me sending a message to The Universe that I want or expect that. At all. ... I'm just saying that, while I hope this surgery does the trick, I need to be honest with myself that, esp since they can't tell me where the first tumor came from or why this happened to me in the first place, there will always be a chance that it could come back. I know that may sound like negative thinking to some of you out there. I assure you that I don't assign negative or pity elements to this thought process. This is purely me being a realist that the other shoe could drop at any time (which, in the world I live in, is a totally different thing than expecting the other shoe to drop). Knowing that this is something I'll have to be regularly scanned and tested for - for the rest of my life - is a coping mechanism and a survival tool for me. While I hope and I pray that this will be the end, and that it will never ever come back, I have to be prepared for the possibility that it might. ... And if that sounds like I'm borrowing trouble, all I can say is that this is the way my brain works, and I have to let my brain be. It takes too much energy to fight the part of me that has to define and prepare for all possible outcomes, and I don't have any energy to spare these days.

Q: What stage is your cancer?
A: There isn't staging with liposarcomas. At least, not in the traditional and familiar sense. When my tumors come out, they're sent to pathologists who dissect them and give them a grade of 1-4. The grading isn't the same as "staging" that you'll hear about with other, more common cancers. If I remember right, my first (22.5 lb) tumor was a grade 3. I don't know what my second tumor was. ... I'll try to remember to ask what #3 and #4 are, so I can report that, but I know I'll be pretty out of it when the reports come in, so I promise you nothing.

Q: How are you?
A: Welllllll.... I'm fine. Except, you know, I have cancer.

Here's a true story from my actual life. My cousin Julie called this afternoon (when I was at the tail end of a crying jag... it's been coming and going like that all day) and she asked how my day had been. I said, "I'm going to be honest here and tell that it's never a good sign when I'm blowing my nose into my shirt". Her response? "Really? My girls do that all the time, and they seem fine." At which point I said, "Well, that's because they're kids. But I'm here to tell you that if they're still doing it when they're 37, it's a sure sign that they have cancer."

Disclaimer: I wasn't actually blowing my nose into my shirt. I was just wiping away the snot with my collar. ... That's SO much better, right?

Q: Are you scared?
A: Of course I am. (And I have the boogery t-shirt to prove it.)

Q: Is there anything I can do to help?
A: Not really. Except prayer - or finding a cure for cancer.

Q: Are you still going to do the Jester'Z fundraiser?
A: Yes, but not any time in the immediate future. For a few reasons, the most important of which are: A) I want to be there, and I won't be able to laugh until at least August. (Not like I'm going to want to laugh, anyway.) and B) I'm in need of a serious cash infusion. By the end of next week. So, I'm working another angle. More details on that to follow...