First in a series

I've been getting a lot of questions lately about how I'm feeling, what I'm doing with my time, why I'm choosing to do that with my time, etc., and while I'm doing my best to answer these questions, individually, as stuff comes in... I figure that not everyone feels like they can ask these questions. (And we all know that I have basically zero pride and will totally overshare when it comes to the details of my life.) So, I've decided to devote a few blog posts to hitting the high/low lights on a few different topics.

First up...

I've been getting asked A LOT if I'm back at work, mixed with why I'm back at work.

Yup. I sure am. I went back on a super part time basis at the end of June. Because I wanted to. (You heard me. ... I literally asked for it.)

When I went to Texas in June and was given those first two months chemo-free, one of my first calls was to the CFO, to ask if we could meet and discuss the possibility of me either returning to work or being armed with a laptop that I could bring home. We had dinner that week, and I was at work bright and early the next Monday.

I started at two hours a day (yup, ten hours a week... told you it was very part time) and gradually worked my way up to a full part time week of 20 hours. ... I keep trying to go over four hours a day. Every once in a while, I'll hit five hours, but then the next day, I feel like death and get pushed back to 3 or 3.5 hours before I know I need to be done.

So, I've pretty much plateaued at 20 hours a week. Which is kind of frustrating, but what I've been learning in the last month is that there's a time to push boundaries, and there's a time to just be glad that I can do what I can do.

What's great about going to work:

I have a reason to get up and put real clothes on every day.

I have somewhere to be.

I have a project. And more than just having a project... it's a project that I have about 98% autonomy on, which has been really good for the parts of my brain that need to create a working wheel. I can't tell you what it has meant to me to have something to think about outside of planning my funeral. (Don't get me wrong, it's gonna be a rocking awesome funeral, and it's actually been sort of fun for my weird control-freakish self to feel like I have a guiding hand in my final party. But still, there's a sense of accomplishment that comes with this work project that I'm sort of missing when I'm working out funeral plans.)

I have responsibilities, but I also work for and with the most accommodating people. They're awesome about when I need to come in later or  leave early for an appointment... or when I can't make it in. (Because some days I just flat out hurt too bad to sit up in a chair that day.)

Going to work gives my life a semblance of normality. ... Even if I stagger up the stairs at 1:00 and am putting myself into bed as soon as I can get back in my pajamas, my mornings feel like I still have my normal life.

I'm working because I want to. The bank has been awesome to me - for all the time that I've known this management team, they have been awesome to me - but this year, especially, they have worked with me as my body's taken a turn for the worse. I'm working because I want to give something back to the bank, because of all they've done for me.

I'm working because I believe in doing all that I can do, and right now I can work part time. It's been my experience that when I do everything I can do, everything else just sort of falls into place when I can't keep going anymore.

What's hard about going to work:

I have somewhere to be, where I'm required to wear real clothes. (It's both a blessing and a curse, man!) I have this project that I'm working on, and every once in a while I have a bad pain day (or... erm... days) and then I start to wonder if/when I'll be able to finish it. And that can stress me out.

But at the end of the day, I am choosing this. I am choosing it because I want to be productive, because I want to contribute what I can, where I can. Because I want to finish this project, and then I want to be strong enough to start on another one.

Because... you guys... if I live, I need to know that I've done everything that I could, for as long as I could. That I never slacked off and let go of what I think is important. ... And if I don't live, I need all the people that I love (especially the kids) to know that I did everything I could, for as long as I could. That I never slacked off and let go of what I think is important.

Here's what I think matters: showing up in your life, doing everything you can do, trying every day to be even a little bit better than you were the day before, never giving up on what matters to you (even if what matters the most is keeping a smile on your face). And, right now, what matters to me is that I'm doing everything I can.

So, yeah, I'm working.  Because, right now, I can. And because I want to.

July 6

I have the best friends and family in the world, I really do. I've been getting a lot of texts, FB messages, emails and voicemails all week....asking how I'm feeling, what I'm eating, how I'm doing and if there's anything that can be done to help me. In the interest of saving every single one of my cousins, ward members, friends from home and other assorted and varied persons in my life some time, I thought I'd do another Q & A post and share some of the most basic information with my public.

Note: This does not mean that you aren't allowed to text, FB, email and/or call me after you've read this post, should you have additional questions that weren't addressed, or if you'd just like a more personal conversation. Just be prepared for a delay in return communication, esp if you call. I'm not answering any phone calls right now, because it's really hard for me to talk on the phone. After hours in surgery, with my lungs slowed/stopped, it's really hard for me to get a deep enough breath to support/sustain my voice. Anyone who calls me either gets a text back from me, or a call from my mother. There's also a delay in FB and email, as I'm having a hard time getting my right hand to type. I allow myself to check/answer emails twice a day, tops, because it is time-intensive and incredibly frustrating to have to literally watch my right hand to make sure it stays on the correct keys and types the letters I'm intending it to. (This also explains why I'm not blogging a lot this week. It's exhausting. And frankly, I've got enough going on that makes me tired these days.) If you text and I'm awake, I'll text you right back. If you text and I'm asleep, I'll text you when I either a) wake up or b) finally pick up my phone and notice that I have 24 new texts. (I did not make that number up, folks. It happens.)

So, with that little disclaimer aside, let's get back to the Q & A:

Q: How are you feeling?

A: Like I lost a bar fight. A really bad one. (Note: I've never actually been in a bar fight. I've just seen a lot of them on TV, esp in my recent Netflix run of Magnum PI. And the kind of bar fight I'm talking about having lost is the kind where you get hit on top of the head with a bottle, fall to the floor, and then get kicked in the gut about a million times before TC finally breaks it up.) The pain in my left side is brutal. And it's unrelenting. The bar-fight-sore is how I feel when I'm right smack in the middle of a pain-pill cycle. During the last half hour of the cycle, and for the first half hour of the next, as I'm waiting for the new drugs to kick in, I do my best not to move, because the pain is excruciating.

I have a weird pain my left shoulder. It started when I came out of surgery, and it was assumed it was air/gas bubbles that had traveled and gotten caught during surgery. (I know, that sounds crazy, but it's happened before in my other surgeries, so it's not an unfamiliar pain to me.) When I had to drink the barium on Saturday and promptly vomited into the hospital trash can, I hurt it some more. (I'd thought I might have dislocated it, but the nursing staff assured me that it wasn't dislocated and it was probably just pulled muscles.) When I eat too much or sleep funny, my left shoulder hurts so bad that it's hard to breathe. It's awesome.

For some reason, my right arm won't bend beyond a 90 degree angle. It'll stretch out even with my shoulder, but there's absolutely no getting it above my head without my other arm holding it up. This makes washing my hair incredibly difficult, and let's not even talk about shaving under that arm. (Just don't judge me for looking like an unwashed  refugee, should you happen to see me on one of my (very short) walks around the neighborhood.) What I'm saying is, my hair is beyond its normal state of un-washed and I have one (count it, one) hairy armpit. Sexy.
Q: How are you sleeping?

A: Fairly well, considering I have both a fabulous bed and a fabulous La-Z-Boy recliner. At night, I go to bed in my bed, where I sleep for 3-4 hours before the pain caused by gravity starts to hurt my side and abdomen. Then, I toddle into the living room and crawl into my recliner and sleep for another 3-4 hours in a semi-reclined position. I try to take all my naps in my bed, because the rest of my day is spent in the recliner. ... I mix it up as much as I can. I'm just grateful for two really comfortable pieces of furniture. I don't know how I'd do this without both of them!

Q: Can I bring you a meal?

A: Sadly, no, because my current diet is beyond bizarre. But thanks for offering.

Q: What are you eating?

A: A whole lotta fiber: Wheat Thins, Wheat Chex, Grape Nut Flakes, Shredded Wheat, wheat toast, blackberries, blueberries, green smoothies, bran pancakes with apricot puree in lieu of syrup (the best thing I've eaten all week, actually - twice), cashews, very small amounts of vanilla yogurt and one scrambled egg at a time (both of which I'm now cut off of, since I haven't pooped since Monday).

Q: You haven't pooped since Monday?!

A: Nope. And I'm taking between 4-6 stool softeners and laxatives a day - PLUS I'm drinking a hardcore laxative every night. Pain meds = constipation, in a fierce way. I'm super burpy, which hurts like the dickens, but I'm trying to be grateful that gas is getting out of my body, even if it is in a very small (and probably inconsequential) way. ... Just call me Pollyanna, looking for the silver lining.

Q: How long did your surgery take?

A: Five and a half hours.

Q: What, exactly, did they take out of you?
A: A couple tumors (the exact size of which I am still waiting to get a report on), my left kidney, my spleen, a section of my colon and as much of my retroperitoneum as Dr. G could scrape out of me. ... The results of which are the bar-fight feeling I referenced earlier, and an unholy amount of swelling. To give you an idea of the swelling: On my right side, when I lift my shirt, you can see a hollow under my ribcage. On the left side, it's still all puffy and round and my ribcage is indecipherable, even though that's the side that had multiple organs taken from it. ... To give further swelling info that's going to border on TMI (one of the things I do best, to be sure): the swelling goes all the way down to my pubic bone. If I'm lying flat in bed, there's a noticeable difference in size of my left to right lower abdomen. If I push on the right side of my pubic bone, there's little to no discomfort. If I push on the left side of my pubic bone, the pain in excruciating.

Q: Does it get easier to heal when you have the same surgery multiple times? As in, your body gets used to it, so it adjusts and heals faster?

A: No, sadly, it does not get easier to heal as I have the same/similar surgery over and over again. I'm sorry to report that it actually gets harder to heal with each and every one. My body is getting older. Every time I'm under anesthesia for hours at a time, it doesn't do my internal organs any good. And, especially with this surgery, where there was so much more than a tumor taken.... recovery is long and hard. The one upside to having had similar surgeries is emotional/intellectual, in that - on the really rough days when I think I might just die if I have to try and take one more incredibly painful breath - I know that things will get easier/better, if I just hang in there. I know that I'll heal and I'll be able to sleep for more than 4 hours at a time, and I'll be able to sneeze without screaming from the pain, and eventually my bowels will go back to normal and my diet can go back to cake and ice cream with a side of popcorn... because I've been cut open before, and I've healed before. Is my body the same as it was three years ago, pre-tumor #1? No. Multiple surgeries and radiation have done a number on it, BUT I know that in a few weeks time, I'll feel a lot more like my normal self, and within a few months, I'll have my new/old body back and I'll be able to do so many of the things that I'm not able to do now.

So, I guess the long and short of this post is... I feel like crap. I mean, crappy, crappy, crap. Almost all the time. Until my pain meds wear off, and then I feel worse. .... But I know that I'll get better, because I always have. It takes time and patience and a whole lot of tears and work and prayer, but I will get better. Again. I know it.

Recovery is a long, hard road. And there are a lot of things that I have to do by myself. ... But when I lift my head and look around, there are ALWAYS people on the sidelines who love me, just watching and waiting their turn, trying to find a way and an appropriate time to jump in and help me. And for these people (you people), I am grateful. You make healing so much easier than it would be if I truly had to do it on my own. Thank you for helping me, each of you, in whatsoever way that you can. I love you!

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: http://www.ehow.com/about_4570381_what-does-spleen-do.html)

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...