So, yesterday afternoon, MD Anderson called. Like... at 4:45. (Turns out, they'd been trying to reach me all day, but my phone was off because my aunt and uncle were here and I was hiding from reality.)
It seems that the only time Dr. G had to put my port in (prior to 2/2) was... uh... tomorrow.
That's right. TOMORROW.
Tomorrow, I'm porting up.
(Gag me with a spoon.)
For real, I am horrified at the thought of having a hole in my chest that goes right to my bloodstream. It is completely disgusting, and I start to cry and gag simultaneously every time I think about it. But that's alright. ... Because the alternative to a port is a picc line that would leave tubes sticking out of my veins. (If there's anything grosser than a port it's a picc line. ... And that's saying something!)
I kept it together through the entire call with Michelle (my favorite MD Anderson nurse), and then fell apart for about three minutes... then I gathered all my gumption back up, picked up a pen, and wrote "port - 2:00" on the calendar that's stuck to my pantry door.
Anyway... that was yesterday.
Then, today... I went to the dentist.
Remember how I really wanted to make sure there wasn't anything that needed to be dealt with before I started chemo?
Uh, yeah. Good thing I went to the dentists, kids!
I have a root canal that's gone wrong. As in, there's an abscess between #3 and #4 and my jawbone has been rotting away. (Gosh, I love it when the medical professionals in my life say things to me that make me want to throw up.)
Awesome possum.
So, next Monday, I'm having a tooth pulled. (Is it still a tooth when there was a root canal and it's mostly just a crown? I'm not sure...) That will give me seven days to get a head start on healing... before they start pouring poison into that hole in my chest that's gonna kill my immune system and wreck my ability to heal.
I also collected a handful of fun flyers when I was at the dentist about what to expect to happen to my mouth when I'm on chemo. (I'm soooo looking forward to that, btw.) I won't go into all the gory details (I'll just say that you can trust me when I say it is gory), but I will tell you that I made a stop at WalMart this afternoon to pick up two prescriptions (antibiotics to kill the abscess, pain meds for the same), some all natural mouthwash that's supposed to help my mouth stay hydrated when I'm doing the chemo... oh, and a baby toothbrush (literally, a BABY toothbrush... as in, it's recommended for babies 5-18 months) because, per the hygienist, I won't want to touch my gums with anything firmer than a sponge or a super soft baby toothbrush. For the next six months.
(I'd have bought a sponge toothbrush, too, but WalMart wasn't that fancy.)
As much as I so do not want to have a tooth pulled next week, I'm choosing to be grateful that I'm aware this is something that needed to be done before I started chemo. As much as I hate that the dang tooth extraction is going to limit my bacon and soda consumption next week, I'm really glad that it's something I can get done before I start treatments. Having that week to start the healing process will go a long way towards that hole in my mouth getting better before I start puking. (I figure that vomit cannot be good when you have an open wound in your mouth.)
I feel like my spirit and my body are at war. Again. ... Still. (Whatever.)
There are so many things that my mind wants to do in the next two weeks, but what I'm learning (again... still... whatever) is that my body has other plans. Bloody and disgusting ones, actually.
I was talking to Jo today (I had called to ask her if she can be my designated driver next week for the tooth extraction) and I told her, half jokingly, that I'm starting to wonder if my body isn't working overtime, trying to break my stubborn spirit. She laughed, then told me I needed to just give in already, so the cancer will go away. ... The thing is, I'm pretty sure it's my stubborn spirit that's kept me alive thus far.
And, once I pointed that out, she agreed that was probably true and we decided it was probably best that we not call a truce with my disturbed and broken, sick and twisted, prematurely old body.
So, it is war.
Tomorrow, I get a hole cut in my chest. ... It's completely vile and totally disgusting to me. (But, really, it'll be better than blowing veins with IV's when I'm in the hospital for my treatments. So, there is that.)
And next week, I'll have a tooth pulled. (I can only hope this will be less traumatic than when I lost my wisdom teeth and it took 6+ weeks for my jaw to heal, so I could open my mouth wide enough for a hamburger. I have big plans for eating in the next 14 days and can't bear the thought of being on a mashed-potatoes-and-gravy-and/or-soup meal plan for that entire last week leading up to chemo.)
Hooray for pain pills and an iron will, right?!
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Tuesday, January 20, 2015
Thursday, July 12, 2012
July 12
The follow-up with the doctor
Basically, I just asked him a bunch of questions and he answered them. This is how all my doctor appointments go. The doctor walks in, shakes my hand, asks how I'm doing - then takes a seat on the rolling stool in the corner and braces himself while I pull out a piece of paper and start rattling off my questions. It's a lot of fun. (For me, anyway.) Dr. G was a good sport and answered every question I threw at him. Here's a brief synopsis of what went down:The size of my new little friend: 11.5 x 5 centimeters. So, it hadn't grown a whole lot between the time that it was found on the CT and removed (along with half a dozen or so other organs) two weeks later. Neither the doctor nor the path report can tell me how much it weighed. This is a bit of a disappointment. (But then, I guess it's also sort of a good sign. I mean, the only tumor whose weight I know was the 22.5 pounder. I'm starting to think they only weigh them when it's something extreme. So, all things considered, I'd rather have a small enough tumor that they don't feel compelled to weigh it upon excision.)
The restricted movement of my right arm (not being able to move it above my shoulder) is most likely due to a pinched nerve when they did the main line. ("The main line" is what all those medical folks call the hole they put in and subsequent IV tube that I had coming out of my jugular. ... Gag.) The doctor prescribed physical therapy to get full motion back, I am waiting for that referral to go through.
There appears to be no timeline/expectation for how long the left side of my body will be swollen. (Surely, you aren't surprised to hear, one more time, "this was an unusual surgery, it's hard to predict how a body's going to react".) The upside is that I no longer feel, ALL THE TIME, like I've been kicked in the gut by 12 angry men. I really am only getting that insane pain now after lying in bed for more than 4 hours, or after I do something really draining... like shower and wash my hair.
The combined numbness/tingling that I feel on my left side, from about my ribcage down to just below my hip, is "normal". In time, the tingling/painful sensation should wear off and I'll most likely just be numb. I'm alright with that. In comparison to pain, especially, I heart nerve damage.
There's no obvious reason that I got a hernia last time, and it's likely that I'll get one again. (Just what I wanted to hear. ... In Opposite Land, maybe.) It seems that the more often surgery is done in the same area (hello, and welcome to the story of my life), the skin cells weaken and aren't able to heal correctly. Thus, a hernia is born. His advice was to lift as little as I can for the first 6 weeks (hi, that's what Mom's here for), to give my stomach a good start in healing. Past that, it's a crap shoot as to whether I'll be able to avoid another hernia. ... Please pray for me. I hated that hernia as much as I've ever hated anything my body's ever done to me (less growing multiple malignant tumors, that is).
I've lost just over 30 lbs in just under 3 weeks.
My platelets are getting down closer to the normal range. They're at 824,000. "Normal" is anywhere from 200,000 to 400,000. ... My platelet count in the hospital was over 1,000,000. And rising every day. They sent me home with a prescription for an Aspirin every day (just like an old man with heart problems). Apparently, it works, since I'm leveling out. I was told to take Aspirin every day for another week, and then I could lay off.
I am truly to never take pain pills other than Tylenol again. ... Prior to surgery, I'd been told not to take Ibuprofen, Advil, Aleve or anything of the sort. I knew that was for sure a pre-surgery rule, and the nurse who delivered the blow had intimated that this would be for the rest of forever. But she was a nurse - who had intimated. And it's not like I don't trust nurses (I so do), she just hadn't been totally clear/confident in her delivery of the info. I needed to hear it from the doctor, just to make sure. ... And now I am sure, I am never to take Ibuprofen, Advil or Aleve ever again. Tylenol is my new BFF, heavy on the "Forever".
The pathology report is in, and I quote: Liposarcoma, predominantly well-differentiated (with myxiod and sclerosing areas) with areas of low grade dedifferentiation, present at margins.
Translation: This is not the best path report I could have hoped for. The tumor cells were getting stronger, going a little more radical. And the margins are positive.
Deep breath.
The hardest part of the visit was Dr. G, reading this pathology report, and then looking up and across the room and saying, "I did the best I could." This, from the man, who four weeks ago, stood across from me, looked me straight in the eyes, and said, "I am confident that I can cure you", makes me want to cry. But he did do the very best he could. I know he did. I feel on a daily, if not hourly basis, that he was thorough, and that he takes his job as a surgeon very seriously. That man took anything and everything that was touching a tumor (I learned that he also took part of my diaphragm - so, tumors, hernia, left kidney, retroperitoneal tissue, spleen, portions of my colon and diaphragm). He also scooped as much fat out of my back as he possibly could. (Lipsarcoma are fat-based tumors, so he took every single bit of fatty tissue he could see, in hopes that he was taking any and all cancer cells with it.)
The margins were positive, and the tumor was just starting to go rogue. Gulp. (Taking a break for a Pollyanna Moment, I must point out that low grade dedifferentiation is SO MUCH BETTER than high grade dedifferentiation. It could - as always - be worse, so much worse.)
Dr. G's going to talk to their on-staff radiation oncologist and get his opinion on whether I would be a candidate for radiation treatments. I've had radiation before (and it was brutal, on every level and in every way), so he isn't sure that they could re-treat me, but once he and the radiation oncologist review my records from my prior treatment, they'll make a decision and let me know their thoughts. If radiation is recommended, I will do it. I will do anything (short of eating baking powder or drinking vinegar, etc.) that will increase the likelihood of stopping this from spreading. Or coming back.
I'll be honest, this pathology report is not what I was hoping for. This is not information that is easy to process, and it was not what I wanted to have to report. And yet, I am hopeful. I am still living in hope and with an ever-present prayer in my heart that this surgery was it, that it will be and stay gone.
Also, I am chanting a new affirmation to myself:
I am whole, strong, perfect, powerful, loving, harmonious, happy, healthy and cancer-free.
(I like that one even better than "Everything will be okay. Everything will be okay. Everything will be okay." - Even though I'm still telling myself that all the time, too.)
I figure that feeding myself positive thoughts - about my body and about my financial future - can't do anything but help.
They'll scan me again in four months' time to check my progress, and make sure that I'm still clean and empty in there. And then we'll continue to do scans every 3-4 months going forward.
This is my life.
I love my doctors. I'm grateful for the knowledge and expertise that they have. I feel that they take a personal interest in my care, and that means so much to me. I'm so incredibly grateful for the Lord's timing, that MD Anderson opened here in the valley just a few short months before I needed them.
This is really hard, and sometimes very scary, stuff that's coming at me. (Way worse than being at bat during a fast-pitch baseball game, which I used to think was the scariest thing that could ever happen to me in the whole wide world.) But I can do this. One day at a time, whatever it is that I need to do, I can do this. ... If only because I have to do it. There is only one other option, and lying down and giving up isn't my style.
I thank God all the time for having made me stubborn, for having injected an extra little something into my spirit that made me a fighter; and I thank my parents all the time for not ever trying to squelch that part of me. I could not have been an easy child to raise, but they let me be me. And now, here I am, entrenched in a fight that I refuse to back off of - surrounded by people who love my stubborn self and will do anything and everything they can to help me in this fight.
At the end of the day, I still love my (sometimes, really hard) life. I'm grateful for who I am, where I am, and the people (literally, all over the globe) who support me. Thank you, to all of you (original 13 and beyond), for all that you do to sustain me emotionally, spiritually and, right now, financially. I couldn't possibly do it without you. Thank you.
Tuesday, July 3, 2012
July 3
I am home.
After:
Twelve days in the hospital
One nephrectomy
One splenectomy
One colectomy
One repaired hernia
Removal of a liposarcomic (liposarcomac?) mass
Not to mention:
The hole they poked in my jugular
A double transfusion. While I was awake. (Did I mention the hole in my jugular? That's what they pumped the blood through.) Thank HEAVEN for two good friends who visited that night and took my mind off the quarts of blood being pumped into my body - through a hole in my neck. (Still gagging, just thinking about it.)
An additional CT on Saturday, which confirmed that I have some excess fluids where my organs used to be. This also explained some of the inexplicable pain I'd been feeling in that region. (For any interested parties, the fluid was deemed "unremarkable". It is assumable that my body will absorb the excess as part of the healing process. Here's hoping they're right, because I'm beyond creeped out at the thought of fluid just sloshing around in there.)
An epic vomit-a-thon, brought on by the barium I had to drink for said CT. ... Enter living through one of the Top Ten Worst Fears of My Life: Puking My Guts Up, Days Within Surgery, When My Stomach is (literally) Stapled Together. I lived through it. Barely. ... That was a special day in my life, followed closely by the gas-and-diarrhea-fest that was getting rid of the rest of the barium (I'd only puked up the first 1/3 of the pitcher of barium), 24 hours later. Again, living through a gut bomb is never fun. But on the heels of abdominal surgery, when you have to hold a pillow to your stomach in an effort to push from the outside, making a conscious effort not to scream out loud whilst pushing.... That was a special, special experience
(Note: For the 13,284th time, I would not recommend abdominal surgery. Ever. Unless it's truly your only option. And at that point, do whatever you can not to ingest anything that's going to have to come out of your body in a fast, furious or otherwise painful manner.)
Oh, and one middle-of-the-night (not sure why I feel that I have to disclaim that, but I do) "accident" because I got so tangled up in my bed and my breathing apparatus that I couldn't make it to the toilet in time
Last night, they released me from the hospital. I may be less a few organs and plus some new aches and pains, but other than that... I'm still me. Only, now I get to be me at home and not at the hospital anymore.
That's right. After, like, half a month spent in the hopsital (not cheap rent either, I tell you)...
I am home.
After:
Twelve days in the hospital
One nephrectomy
One splenectomy
One colectomy
One repaired hernia
Removal of a liposarcomic (liposarcomac?) mass
Not to mention:
The hole they poked in my jugular
A double transfusion. While I was awake. (Did I mention the hole in my jugular? That's what they pumped the blood through.) Thank HEAVEN for two good friends who visited that night and took my mind off the quarts of blood being pumped into my body - through a hole in my neck. (Still gagging, just thinking about it.)
An additional CT on Saturday, which confirmed that I have some excess fluids where my organs used to be. This also explained some of the inexplicable pain I'd been feeling in that region. (For any interested parties, the fluid was deemed "unremarkable". It is assumable that my body will absorb the excess as part of the healing process. Here's hoping they're right, because I'm beyond creeped out at the thought of fluid just sloshing around in there.)
An epic vomit-a-thon, brought on by the barium I had to drink for said CT. ... Enter living through one of the Top Ten Worst Fears of My Life: Puking My Guts Up, Days Within Surgery, When My Stomach is (literally) Stapled Together. I lived through it. Barely. ... That was a special day in my life, followed closely by the gas-and-diarrhea-fest that was getting rid of the rest of the barium (I'd only puked up the first 1/3 of the pitcher of barium), 24 hours later. Again, living through a gut bomb is never fun. But on the heels of abdominal surgery, when you have to hold a pillow to your stomach in an effort to push from the outside, making a conscious effort not to scream out loud whilst pushing.... That was a special, special experience
(Note: For the 13,284th time, I would not recommend abdominal surgery. Ever. Unless it's truly your only option. And at that point, do whatever you can not to ingest anything that's going to have to come out of your body in a fast, furious or otherwise painful manner.)
Oh, and one middle-of-the-night (not sure why I feel that I have to disclaim that, but I do) "accident" because I got so tangled up in my bed and my breathing apparatus that I couldn't make it to the toilet in time
Last night, they released me from the hospital. I may be less a few organs and plus some new aches and pains, but other than that... I'm still me. Only, now I get to be me at home and not at the hospital anymore.
That's right. After, like, half a month spent in the hopsital (not cheap rent either, I tell you)...
I am home.
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: 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...
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...
Wednesday, July 6, 2011
She's my favorite. (Also, I heart Jim Rockford.)
As any frequent reader of my blog will know, my mom rocks.
I mean it. Seriously, she rocks!
For a lot of reasons, not the least of which is that she's come every single time I've had surgery in the last year (which was a lot of times - three) and has taken care of me (and the shopping, and the driving, and the vacuuming, and the laundry and the dish-washing ... you get the picture) while I'm down for the count.
I love her. Like, totally. (In a different way than how I love Nathan. ... But more.)
Not only is she super nice, but she's fun (and funny), a great little alterer of dresses and skirts and shirts, and we have very much the same taste in entertainment - which makes for a good time. This last time she was here, we watched a lot of classic TV. Our favorite? Hands down, The Rockford Files. Mom's favorite part of the show? The answering machine messages at the beginning of the episode. Per Mom, and I quote, "We should have something like that at church. If we did, no one would be late. ... I sure never wanted to be late to watch The Rockford Files, because I knew I'd miss the answering machine!"
This is for you, Mom. Enjoy! ... Well, enjoy the messages. Don't look at the pictures. They're a little grody, esp the pizza. (These slides were - obviously - not chosen by me.) You know what they should have shown as images for the 3 or so minutes of play time? James Garner, that's what. Over and over again. And then again. (Too bad no one ever asks my opinion before they make and upload a youtube video, right?)
Mom and I had a blast fast-forwarding through the car-chase and/or driving scenes in Rockford, so we could get right back to enjoying the witty dialogue and circa 1974 cars and wardrobe.
Seriously, Rockford's a good time.
Just like Ude. (Well, not just like her. In a different way than her. ... Kind of like how I love her, and how I love Nathan, but differently. You know what I mean.)
Besides watching TV, Mom and I:
altered many pieces of clothing
watched Jane, and The Pie Maker and Dan (amongst other things)
baked to our little hearts' content
ate fudgecicles, Chinese food, raspberries, chocolate cake and fried chicken (listen - I have cravings, severe cravings - don't judge)
Of course, we also went to the doctors a lot of times and she listened to me whine about the gauze in my bum and my broken tooth. So, it's not like it was all a party.
But, in retrospect, it was mostly a party. Why? Because she's my favorite, and when I weigh the hard/bad things against the good ... with her, the good always outweighs the bad. I'm so lucky that she's my mom and my friend. (And that she likes fried chicken and chocolate cake as much as I do.)
I mean it. Seriously, she rocks!
For a lot of reasons, not the least of which is that she's come every single time I've had surgery in the last year (which was a lot of times - three) and has taken care of me (and the shopping, and the driving, and the vacuuming, and the laundry and the dish-washing ... you get the picture) while I'm down for the count.
I love her. Like, totally. (In a different way than how I love Nathan. ... But more.)
Not only is she super nice, but she's fun (and funny), a great little alterer of dresses and skirts and shirts, and we have very much the same taste in entertainment - which makes for a good time. This last time she was here, we watched a lot of classic TV. Our favorite? Hands down, The Rockford Files. Mom's favorite part of the show? The answering machine messages at the beginning of the episode. Per Mom, and I quote, "We should have something like that at church. If we did, no one would be late. ... I sure never wanted to be late to watch The Rockford Files, because I knew I'd miss the answering machine!"
This is for you, Mom. Enjoy! ... Well, enjoy the messages. Don't look at the pictures. They're a little grody, esp the pizza. (These slides were - obviously - not chosen by me.) You know what they should have shown as images for the 3 or so minutes of play time? James Garner, that's what. Over and over again. And then again. (Too bad no one ever asks my opinion before they make and upload a youtube video, right?)
Mom and I had a blast fast-forwarding through the car-chase and/or driving scenes in Rockford, so we could get right back to enjoying the witty dialogue and circa 1974 cars and wardrobe.
Seriously, Rockford's a good time.
Just like Ude. (Well, not just like her. In a different way than her. ... Kind of like how I love her, and how I love Nathan, but differently. You know what I mean.)
Besides watching TV, Mom and I:
altered many pieces of clothing
watched Jane, and The Pie Maker and Dan (amongst other things)
baked to our little hearts' content
ate fudgecicles, Chinese food, raspberries, chocolate cake and fried chicken (listen - I have cravings, severe cravings - don't judge)
Of course, we also went to the doctors a lot of times and she listened to me whine about the gauze in my bum and my broken tooth. So, it's not like it was all a party.
But, in retrospect, it was mostly a party. Why? Because she's my favorite, and when I weigh the hard/bad things against the good ... with her, the good always outweighs the bad. I'm so lucky that she's my mom and my friend. (And that she likes fried chicken and chocolate cake as much as I do.)
Tuesday, June 7, 2011
A week from today...
I'm having surgery. Again.
My life is awesome like that.
This will be the third surgery I'll have had in the last 12 months. It's, luckily (and thankfully) going to be a lot less invasive than the last two. I'm looking forward to having an outpatient procedure instead of my usual open-abdomen routine followed by a full week in a hospital bed.
I met with my surgeon last week in order to go over my list of pre-surgery questions. We all know how I love to make lists. You should see the list of questions I came up with for this one. In fact, I think I'll show you. That'll be a good time, for sure.
How do you know where the cysts are? Will you have to do a CT to know where to cut? (I had to ask, because I usually have multiple scans prior to surgery. It turns out that these suckers are always in the same place.) There's no need to do a scan prior to surgery, as pilonidal cysts are always at the base of your tailbone. (Which, apparently, is an easy find.) Good to know.
So, is it just the one cyst, or is there a chance that there's more than one? ... Oh, there's probably more than one. They start on the end of your tailbone, but they build on top of each other and literally finger out (he gestured with his hand, by extending his fingers and stretching them out). Awesome. I need a bowl, just thinking about having finger-like cysts spreading out at the base of my tailbone. (On the other hand, that does explain why there is not one single, solitary position that is comfortable to sit in right now...)
Will I be awake for the surgery? No. I will be totally out. THANK HEAVEN! ... Originally, I'd been told that it would be a local anesthetic. Halle-freakin-lujah that the man remembered what a nervous freak I am and decided to put me totally down. I mean under. (You put dogs down, right? Soooo not what I'm looking for!)
What's the likelihood that these cysts will grow back after removal? Per the doc, it's "pretty high". (Pretty high = 10%, btw.) Uh... a 10% chance of recurrence is not high in the world that I live in. I'll tell you what I told the doctor, "I'm living with a 60% chance of recurrence of a malignant tumor. I'll take a 10% odds of recurring benign cysts any old day. Cut them out!"
Can I expect to sit... like, at all? Yes. On cushioned furniture with extra pillows (good thing I have that approx 8 inches thick pillow that's too fluffy to even think about napping on, lest I break my little neck), or on a donut (thank you, Jo, for being the possessor of many strange and unusual objects (read: having a donut I can borrow) so I don't have to be the proud owner of both a walker, complete with tennis balls, and a donut). Good grief.
Will I have stitches or - heaven forbid - staples? Stitches.
Will they be the kind that automatically dissolve, or will I have to go in and have them removed? ... Oh, yeah. There will be stitches. Lots of them. One round will be removed one week after surgery, the next round will come out at the two week mark. (Awesome. Totally looking forward to those appointments. ... Get me a bowl!)
Can I be in water? Yes and no. Showers, yes. Bathtubs, no. Swimming pools, absolutely not for 4 weeks, and possibly longer, depending on healing. ... Argh, it's gonna be a hot summer for me.
How big is the incision? Approx two inches deep and two inches wide, varying on how many cysts there are to remove. Super awesome. (Again, if you need a bowl right now, I am not judging.) It will be a closed incision (see above for intel on the stitches), which I'm grateful for, as WebMD had scared the pants off me with all of their talk of open incisions and having to pack the area with gauze. (Ewh.)
Should I be on antibiotics? (Not to be too graphic, but have I mentioned that they've been irritated and infected since mid-March?) Oh, yeah, I should be on antibiotics. They'll give me a hardcore dose of antibiotics at surgery to take care of any surgery-related infection issues, but if there's even a chance of infection prior to surgery, he'll have to leave the incision open for drainage. ... Guess who's on a 10 day round of Amoxicillin? Uh, yeah. Me. (Threaten me with an open incision and I'll swallow as many horse pills as ... well, a horse.)
Will I be able to walk? (Because we all know that I am a big fan of taking walks on a daily basis, though maybe not so much in the coming Summer heat.) Yes. No. Maybe a little bit. I'll technically be able to walk, but I shouldn't walk more than a mile a day, lest I irritate the incision. ... Message received loud and clear. I will be lying on my side, eating ice cream and watching Alias for weeks. I'm all about NOT irritating an incision more than absolutely necessary, folks. All about that.
Other information he just volunteered, because I didn't have the foresight to ask:
There will be drainage. Not much, but expect some. (Ewh.)
It's not necessary to apply any special ointment. (Ointment is a creepy word. I'm so glad to know that I don't have any "special" kinds of it.)
I'll be out of work for approx 4 weeks. As of now, I'm estimated to return to work mid-July and will work part-time (as I have been through May) until the first week of August, at which point I plan to resume "life, as usual".
And that's the scoop, folks. The situation and procedure are a little creepy and weird, but I'm so sick of not being able to sit like a normal person that I'm actually excited to get this done and move on to some actual healing. (As of now, my upper back hurts almost constantly because my core isn't strong enough to support my movement. When I wake up, my back doesn't hurt. By 10:00 AM, it burns. By 2:00 PM, I'm in agony. It's awesome. And there's no relief that doesn't compromise another area. If I lie on my side, my incision hurts. If I lie on my back, my tailbone screams at me. And I don't even want to tell you what kind of expletives my tailbone uses if I try to sit down and lean back into the couch or recliner to give my back a break. ... It's a good thing that a little internal PG-13 language isn't a big deal to me, is all I'm saying.) I'm not trying to throw a pity party - I'm just saying that I'm pretty psyched at the promise of weeks lying down, drugged up on the good stuff again. (Because I like to err on the side of not being addicted to prescription pain pills, I've been limited to Ibuprofen and Tylenol for the last six or so weeks. Knowing that Percocet is right around the corner is a comfort on a whole lot of levels.)
I'll keep any and/or all of you posted as time (and medication) allows. ... If there's anything I've learned from the last year of surgery and such, it's that prescription drugs (oh, and pain) limit my ability to post something coherent on any kind of regular basis. (Not that I'm known for my incredibly well-thought out posts when I'm drug-and-pain-free, but whatever.)
My life is awesome like that.
This will be the third surgery I'll have had in the last 12 months. It's, luckily (and thankfully) going to be a lot less invasive than the last two. I'm looking forward to having an outpatient procedure instead of my usual open-abdomen routine followed by a full week in a hospital bed.
I met with my surgeon last week in order to go over my list of pre-surgery questions. We all know how I love to make lists. You should see the list of questions I came up with for this one. In fact, I think I'll show you. That'll be a good time, for sure.
How do you know where the cysts are? Will you have to do a CT to know where to cut? (I had to ask, because I usually have multiple scans prior to surgery. It turns out that these suckers are always in the same place.) There's no need to do a scan prior to surgery, as pilonidal cysts are always at the base of your tailbone. (Which, apparently, is an easy find.) Good to know.
So, is it just the one cyst, or is there a chance that there's more than one? ... Oh, there's probably more than one. They start on the end of your tailbone, but they build on top of each other and literally finger out (he gestured with his hand, by extending his fingers and stretching them out). Awesome. I need a bowl, just thinking about having finger-like cysts spreading out at the base of my tailbone. (On the other hand, that does explain why there is not one single, solitary position that is comfortable to sit in right now...)
Will I be awake for the surgery? No. I will be totally out. THANK HEAVEN! ... Originally, I'd been told that it would be a local anesthetic. Halle-freakin-lujah that the man remembered what a nervous freak I am and decided to put me totally down. I mean under. (You put dogs down, right? Soooo not what I'm looking for!)
What's the likelihood that these cysts will grow back after removal? Per the doc, it's "pretty high". (Pretty high = 10%, btw.) Uh... a 10% chance of recurrence is not high in the world that I live in. I'll tell you what I told the doctor, "I'm living with a 60% chance of recurrence of a malignant tumor. I'll take a 10% odds of recurring benign cysts any old day. Cut them out!"
Can I expect to sit... like, at all? Yes. On cushioned furniture with extra pillows (good thing I have that approx 8 inches thick pillow that's too fluffy to even think about napping on, lest I break my little neck), or on a donut (thank you, Jo, for being the possessor of many strange and unusual objects (read: having a donut I can borrow) so I don't have to be the proud owner of both a walker, complete with tennis balls, and a donut). Good grief.
Will I have stitches or - heaven forbid - staples? Stitches.
Will they be the kind that automatically dissolve, or will I have to go in and have them removed? ... Oh, yeah. There will be stitches. Lots of them. One round will be removed one week after surgery, the next round will come out at the two week mark. (Awesome. Totally looking forward to those appointments. ... Get me a bowl!)
Can I be in water? Yes and no. Showers, yes. Bathtubs, no. Swimming pools, absolutely not for 4 weeks, and possibly longer, depending on healing. ... Argh, it's gonna be a hot summer for me.
How big is the incision? Approx two inches deep and two inches wide, varying on how many cysts there are to remove. Super awesome. (Again, if you need a bowl right now, I am not judging.) It will be a closed incision (see above for intel on the stitches), which I'm grateful for, as WebMD had scared the pants off me with all of their talk of open incisions and having to pack the area with gauze. (Ewh.)
Should I be on antibiotics? (Not to be too graphic, but have I mentioned that they've been irritated and infected since mid-March?) Oh, yeah, I should be on antibiotics. They'll give me a hardcore dose of antibiotics at surgery to take care of any surgery-related infection issues, but if there's even a chance of infection prior to surgery, he'll have to leave the incision open for drainage. ... Guess who's on a 10 day round of Amoxicillin? Uh, yeah. Me. (Threaten me with an open incision and I'll swallow as many horse pills as ... well, a horse.)
Will I be able to walk? (Because we all know that I am a big fan of taking walks on a daily basis, though maybe not so much in the coming Summer heat.) Yes. No. Maybe a little bit. I'll technically be able to walk, but I shouldn't walk more than a mile a day, lest I irritate the incision. ... Message received loud and clear. I will be lying on my side, eating ice cream and watching Alias for weeks. I'm all about NOT irritating an incision more than absolutely necessary, folks. All about that.
Other information he just volunteered, because I didn't have the foresight to ask:
There will be drainage. Not much, but expect some. (Ewh.)
It's not necessary to apply any special ointment. (Ointment is a creepy word. I'm so glad to know that I don't have any "special" kinds of it.)
I'll be out of work for approx 4 weeks. As of now, I'm estimated to return to work mid-July and will work part-time (as I have been through May) until the first week of August, at which point I plan to resume "life, as usual".
And that's the scoop, folks. The situation and procedure are a little creepy and weird, but I'm so sick of not being able to sit like a normal person that I'm actually excited to get this done and move on to some actual healing. (As of now, my upper back hurts almost constantly because my core isn't strong enough to support my movement. When I wake up, my back doesn't hurt. By 10:00 AM, it burns. By 2:00 PM, I'm in agony. It's awesome. And there's no relief that doesn't compromise another area. If I lie on my side, my incision hurts. If I lie on my back, my tailbone screams at me. And I don't even want to tell you what kind of expletives my tailbone uses if I try to sit down and lean back into the couch or recliner to give my back a break. ... It's a good thing that a little internal PG-13 language isn't a big deal to me, is all I'm saying.) I'm not trying to throw a pity party - I'm just saying that I'm pretty psyched at the promise of weeks lying down, drugged up on the good stuff again. (Because I like to err on the side of not being addicted to prescription pain pills, I've been limited to Ibuprofen and Tylenol for the last six or so weeks. Knowing that Percocet is right around the corner is a comfort on a whole lot of levels.)
I'll keep any and/or all of you posted as time (and medication) allows. ... If there's anything I've learned from the last year of surgery and such, it's that prescription drugs (oh, and pain) limit my ability to post something coherent on any kind of regular basis. (Not that I'm known for my incredibly well-thought out posts when I'm drug-and-pain-free, but whatever.)
Wednesday, May 4, 2011
Heigh-Ho!
That's right, folks, it's come to that. ("That", being going back into the workforce.) It's been 6 weeks and 1 day since I had surgery (and I'm pleased to report that I can now sleep on my side all night long - glory be and hallelujah! - I may still struggle to lift a full gallon of milk and wearing heels makes my core feel like it's about to spontaneously combust, but at least I can lie on my side).
My advice to you: Don't ever have your abdomen cut open, specifically in a vertical line from the top of your ribcage down past your bellybutton. It may be the only way to remove certain types of tumors, but still... it hurts and the recovery is long and arduous.
My further advice to you: Don't grow a tumor. Don't. Don't even think about that. Not growing tumors will most likely save you from said surgery, which will make your blog/public journal a lot more fun for your readers. (I know that mine get a little sick of the carnage from time to time.)
So... I'm returning to work, bright and early tomorrow morning. I may even sing like I'm a dwarf. (But only because I like to say "dig" over and over and over again in a silly voice. Not because I actually work in a diamond mine.)
As some of you are aware, I had hoped to extend my medical leave to have a secondary procedure done. As a result of my previous surgery and bed-ridden-ness, I have Pilonidal Cysts (cysts on the end of my tailbone) that have become infected and need to be surgically removed. If you're the medical awareness type and would like more info on exactly what these are, click here. There aren't pictures (though I'm sure you could find them, if you're a sicko who's into that kind of thing), but there's a little write-up/explanation of what they are.
Let me just tell you - they hurt. Miserably. And the longer I was down flat on my back and/or bum from surgery, the worse they got. (Again, there are not words for how grateful I am that I can now lie on my side.)
Anyhoo... I'd hoped to have surgery this month to have them removed, then return to work in June once I was all healed up, but that was not to be. The new plan is to return to work now, and work through the second week of June, at which time I will qualify for FMLA again, then I'll go back out on a secondary medical leave and have the cyst issue remedied. (As most of you are aware, I'd exhausted by FMLA in 2010 with a similar tumor-removal procedure, and my employer, out of the goodness of their hearts, granted my initial 6 week medical leave to have surgery in March of this year. Bless them forever and ever for giving me unpaid time off work that they didn't have to give. I'm so grateful.)
I'll be working limited hours, because... uh... because I can't exactly sit for a 10 hour shift these days. Work has been incredibly gracious and understanding of my limitations, as have my insurance companies. The plan is that I'll work the next 6 weeks on a part-time basis, and then go out for approx 4 weeks to have another surgery mid-summer.
My life is a zoo. A medical zoo. By the time I have this next procedure done, I will have had 3 surgeries in 12 months. Two of them were incredibly invasive. (The third is just a little awkward. But whatever gets rid of the pain, man.) Prior to June 2010, I had never been cut open, I sure didn't have any tattoos (thank you, Radiation, for those 5 tats on my tummy), I had never taken prescription pain meds, I had never had a scar over 1/2 inch long.
Boy howdy, has the last year set some new parameters for me. I have been sicker than I would have ever thought possible. I've had to learn to live with pain that was previously unimaginable. I've learned a whole new definition of "poor" (you try not working for 3 months of the year, two years in a row and see what it does to your budget). I've had relationships change (and some die), because I wasn't well enough to put as much energy into them as I had been able to do previously. ... At the same time, I've learned that being sick doesn't mean that you have to be miserable, and that even when you're in pain you can choose to be happy. I've learned that a very small amount of money is enough, as long as I pay my tithing and use what is left for what it needful. The relationships that have withstood the test of time (and me being sick and unable to go and do) have strengthened. I am closer to my friends and family than I ever have been. Having been limited to what contact I can make by phone or by internet has brought me closer to my people than I ever was when I could pick up and go and do.
Relationships have been redefined, money has a different value to me, I am infinitely more aware of the importance of choice - because sometimes (oftentimes) the only choice any of us has is how we react to what snow cone we were given. (For the record, I would have chosen a grape snow cone. That sure isn't what I got, but it's what I would have chosen. I heart purple syrup.)
The last few months, the last year, really, has been hard. But it has also been good. I testify that the Lord really doesn't give us more than we can handle. I know this, because He has helped me handle things on a day to day basis that were previously unimaginable. I know that there is a greater measure of good than bad, in all of our lives, if we but look for it. In the face of trial and affliction, I have seen more blessings than I had ever been able to see before. I've always loved the scripture about there being opposition in all things, but I have an entirely new likening for that scripture in my life. I know that He will never let what is hard outweigh what is good. There is always an opposition, it's an eternal law. Hard things happen, but so do awesome, incredible, happy and even easy things. When I have looked for the opposition (or opposite) of what I have struggled with, I have found more light and more peace than I had ever experienced before. I have so very many blessings, in large part, because I have been so very sick.
Of course, I still recommend not growing a tumor. (Seriously. Don't do it.) But here's the thing - having grown a tumor (and then another one) changed me. I have always liked to think of myself as a happy girl, I have always tried to find the upside or funny things in life. But it wasn't until, literally, the only choice I had in how I felt was in how I let my spirit react to what my body was going through that I realized how incredible agency is, and that the Lord is always there, even in the tiny, little, otherwise unnoticeable and insignificant details. I love Him, and because of Him, I can do whatever it is that I need to do.
And this week, what I need to do is to go back to work. So I will. And it will be hard, but it will be doable. And I only have to do it for 6 weeks. I just may have to complain about my bum from time to time. (I know how much my mom loves it (heavy sarcasm there, folks) when I put really personal and sometimes gruesome details on my blog, but the thing is... no way am I the only person who has to deal with this stuff, and if it will help any one single person to know that they aren't the only person who has cysts on their tailbone, I will totally talk about it.)
So, tomorrow I'm off to work. For a nice, short, half-day. (Look at me, pep-talking myself.) And then I'm pretty sure I'll sing all the way home. Why? Because my life is a musical. (Besides, it's a fun little ditty that everyone should get stuck in their head from time to time.)
My advice to you: Don't ever have your abdomen cut open, specifically in a vertical line from the top of your ribcage down past your bellybutton. It may be the only way to remove certain types of tumors, but still... it hurts and the recovery is long and arduous.
My further advice to you: Don't grow a tumor. Don't. Don't even think about that. Not growing tumors will most likely save you from said surgery, which will make your blog/public journal a lot more fun for your readers. (I know that mine get a little sick of the carnage from time to time.)
So... I'm returning to work, bright and early tomorrow morning. I may even sing like I'm a dwarf. (But only because I like to say "dig" over and over and over again in a silly voice. Not because I actually work in a diamond mine.)
As some of you are aware, I had hoped to extend my medical leave to have a secondary procedure done. As a result of my previous surgery and bed-ridden-ness, I have Pilonidal Cysts (cysts on the end of my tailbone) that have become infected and need to be surgically removed. If you're the medical awareness type and would like more info on exactly what these are, click here. There aren't pictures (though I'm sure you could find them, if you're a sicko who's into that kind of thing), but there's a little write-up/explanation of what they are.
Let me just tell you - they hurt. Miserably. And the longer I was down flat on my back and/or bum from surgery, the worse they got. (Again, there are not words for how grateful I am that I can now lie on my side.)
Anyhoo... I'd hoped to have surgery this month to have them removed, then return to work in June once I was all healed up, but that was not to be. The new plan is to return to work now, and work through the second week of June, at which time I will qualify for FMLA again, then I'll go back out on a secondary medical leave and have the cyst issue remedied. (As most of you are aware, I'd exhausted by FMLA in 2010 with a similar tumor-removal procedure, and my employer, out of the goodness of their hearts, granted my initial 6 week medical leave to have surgery in March of this year. Bless them forever and ever for giving me unpaid time off work that they didn't have to give. I'm so grateful.)
I'll be working limited hours, because... uh... because I can't exactly sit for a 10 hour shift these days. Work has been incredibly gracious and understanding of my limitations, as have my insurance companies. The plan is that I'll work the next 6 weeks on a part-time basis, and then go out for approx 4 weeks to have another surgery mid-summer.
My life is a zoo. A medical zoo. By the time I have this next procedure done, I will have had 3 surgeries in 12 months. Two of them were incredibly invasive. (The third is just a little awkward. But whatever gets rid of the pain, man.) Prior to June 2010, I had never been cut open, I sure didn't have any tattoos (thank you, Radiation, for those 5 tats on my tummy), I had never taken prescription pain meds, I had never had a scar over 1/2 inch long.
Boy howdy, has the last year set some new parameters for me. I have been sicker than I would have ever thought possible. I've had to learn to live with pain that was previously unimaginable. I've learned a whole new definition of "poor" (you try not working for 3 months of the year, two years in a row and see what it does to your budget). I've had relationships change (and some die), because I wasn't well enough to put as much energy into them as I had been able to do previously. ... At the same time, I've learned that being sick doesn't mean that you have to be miserable, and that even when you're in pain you can choose to be happy. I've learned that a very small amount of money is enough, as long as I pay my tithing and use what is left for what it needful. The relationships that have withstood the test of time (and me being sick and unable to go and do) have strengthened. I am closer to my friends and family than I ever have been. Having been limited to what contact I can make by phone or by internet has brought me closer to my people than I ever was when I could pick up and go and do.
Relationships have been redefined, money has a different value to me, I am infinitely more aware of the importance of choice - because sometimes (oftentimes) the only choice any of us has is how we react to what snow cone we were given. (For the record, I would have chosen a grape snow cone. That sure isn't what I got, but it's what I would have chosen. I heart purple syrup.)
The last few months, the last year, really, has been hard. But it has also been good. I testify that the Lord really doesn't give us more than we can handle. I know this, because He has helped me handle things on a day to day basis that were previously unimaginable. I know that there is a greater measure of good than bad, in all of our lives, if we but look for it. In the face of trial and affliction, I have seen more blessings than I had ever been able to see before. I've always loved the scripture about there being opposition in all things, but I have an entirely new likening for that scripture in my life. I know that He will never let what is hard outweigh what is good. There is always an opposition, it's an eternal law. Hard things happen, but so do awesome, incredible, happy and even easy things. When I have looked for the opposition (or opposite) of what I have struggled with, I have found more light and more peace than I had ever experienced before. I have so very many blessings, in large part, because I have been so very sick.
Of course, I still recommend not growing a tumor. (Seriously. Don't do it.) But here's the thing - having grown a tumor (and then another one) changed me. I have always liked to think of myself as a happy girl, I have always tried to find the upside or funny things in life. But it wasn't until, literally, the only choice I had in how I felt was in how I let my spirit react to what my body was going through that I realized how incredible agency is, and that the Lord is always there, even in the tiny, little, otherwise unnoticeable and insignificant details. I love Him, and because of Him, I can do whatever it is that I need to do.
And this week, what I need to do is to go back to work. So I will. And it will be hard, but it will be doable. And I only have to do it for 6 weeks. I just may have to complain about my bum from time to time. (I know how much my mom loves it (heavy sarcasm there, folks) when I put really personal and sometimes gruesome details on my blog, but the thing is... no way am I the only person who has to deal with this stuff, and if it will help any one single person to know that they aren't the only person who has cysts on their tailbone, I will totally talk about it.)
So, tomorrow I'm off to work. For a nice, short, half-day. (Look at me, pep-talking myself.) And then I'm pretty sure I'll sing all the way home. Why? Because my life is a musical. (Besides, it's a fun little ditty that everyone should get stuck in their head from time to time.)
Thursday, March 31, 2011
I'm baaaack...
Though I'll warn you, right here and now, my meds are having some serious effects on my small motor skills. Also, my sentence structure capabilities are greatly diminished. (Read: I cannot type, spell, or grammar. Forgive me, for I know not what I do.)
If you were here, maybe you'd be lucky enough to see me fall asleep mid-sentence, or maybe wipe some drool out of the corner of my mouth.
I'm kidding.
Actually, I am not. It's a sad, sad state of being when a 36 yr old cancer patient can't keep her eyes open or her mouth shut, but there it is.
I, for one, am just grateful for pain meds that allow me to stay in a state of semi-consciousness for most of the day. As most of you know, the surgery was last Tuesday (the 22nd - nine months, to the day, from my last surgery). The incision is only 10 inches long this time, from my ribcage just past my bellybutton. It's still a nasty old incision, staples and all, but those'll come out tomorrow and then I'll be back on track for growing a healthy pink scar down my belly. Ooh-la-la.
Surgery went well. When the surgeons went in, they found that the tumor was not, in fact, on my kidney. It was in my retroperitineal tissue (same site as the tumor of 2010), and was free-floating near my kidney. When it was removed, it was about the size of a baseball (and Mich and the Walton girls have been hoping to make a baseball fan out of me - guess again). When the first scan was done at the end of January, it was measuring at just larger than a dime - kind of an oval sized dime, but dime-sized, nonetheless - and when it came out, not 8 weeks later, it was the size of a baseball. No kidding, liposarcomas are fast growing tumors! (I hate them.)
There are things that are better this time around, there are things that are worse. It's nice to have some kind of expectation of how long pain will last, or what I can or cannot do. At the same time, it is hard, because I know exactly what will hurt, how badly, and for how long. I am very aware of what I can and cannot do.
My life. It is a dichotomy. A surgically created dichotomy.
The good news? My right eye only twitches a few times a day now (versus the almost constant full face twitching I had going on while in the hospital), and I can have all the M&M's I want (I was on a very strict "no M&M's' diet while under the care of the nurses at the hospital - they were little to no fun). So, I'm home. I sleep a lot. When I'm not sleeping, I'm either eating M&M's or Wheat Thins, hobbling about my apartment or pushing my old lady walker around the parking lot. Life is good. Without pain meds every four hours, life is very, very painful, but still... life is good.
My post-op follow-up with the surgeon is tomorrow. He'll take out my staples, press on my stomach and side and make me want to cry and then will most likely tell me everything's normal. I don't have answers yet as far as "what's next?". I don't yet know about the possibility of chemo, or other treatment options. I'll have that appointment with that doctor, most likely next week. I'll keep you posted.
For now, I nap a lot. I mean, a lot. And I eat cheese sauce on toast with corn, because my mommy's here and she knows what food always makes a sick kid feel better. So, I'm back. Still too tired to really talk (esp on the phone - I don't have strong enough air control yet, phone convos wipe me out), but I'm back in my own little corner of the world, taking up residence in my maroon recliner, watching the most recent episode of Castle on hulu. Life is good. Even if it's not totally "normal", it's still good.
If you were here, maybe you'd be lucky enough to see me fall asleep mid-sentence, or maybe wipe some drool out of the corner of my mouth.
I'm kidding.
Actually, I am not. It's a sad, sad state of being when a 36 yr old cancer patient can't keep her eyes open or her mouth shut, but there it is.
I, for one, am just grateful for pain meds that allow me to stay in a state of semi-consciousness for most of the day. As most of you know, the surgery was last Tuesday (the 22nd - nine months, to the day, from my last surgery). The incision is only 10 inches long this time, from my ribcage just past my bellybutton. It's still a nasty old incision, staples and all, but those'll come out tomorrow and then I'll be back on track for growing a healthy pink scar down my belly. Ooh-la-la.
Surgery went well. When the surgeons went in, they found that the tumor was not, in fact, on my kidney. It was in my retroperitineal tissue (same site as the tumor of 2010), and was free-floating near my kidney. When it was removed, it was about the size of a baseball (and Mich and the Walton girls have been hoping to make a baseball fan out of me - guess again). When the first scan was done at the end of January, it was measuring at just larger than a dime - kind of an oval sized dime, but dime-sized, nonetheless - and when it came out, not 8 weeks later, it was the size of a baseball. No kidding, liposarcomas are fast growing tumors! (I hate them.)
There are things that are better this time around, there are things that are worse. It's nice to have some kind of expectation of how long pain will last, or what I can or cannot do. At the same time, it is hard, because I know exactly what will hurt, how badly, and for how long. I am very aware of what I can and cannot do.
My life. It is a dichotomy. A surgically created dichotomy.
The good news? My right eye only twitches a few times a day now (versus the almost constant full face twitching I had going on while in the hospital), and I can have all the M&M's I want (I was on a very strict "no M&M's' diet while under the care of the nurses at the hospital - they were little to no fun). So, I'm home. I sleep a lot. When I'm not sleeping, I'm either eating M&M's or Wheat Thins, hobbling about my apartment or pushing my old lady walker around the parking lot. Life is good. Without pain meds every four hours, life is very, very painful, but still... life is good.
My post-op follow-up with the surgeon is tomorrow. He'll take out my staples, press on my stomach and side and make me want to cry and then will most likely tell me everything's normal. I don't have answers yet as far as "what's next?". I don't yet know about the possibility of chemo, or other treatment options. I'll have that appointment with that doctor, most likely next week. I'll keep you posted.
For now, I nap a lot. I mean, a lot. And I eat cheese sauce on toast with corn, because my mommy's here and she knows what food always makes a sick kid feel better. So, I'm back. Still too tired to really talk (esp on the phone - I don't have strong enough air control yet, phone convos wipe me out), but I'm back in my own little corner of the world, taking up residence in my maroon recliner, watching the most recent episode of Castle on hulu. Life is good. Even if it's not totally "normal", it's still good.
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