Tuesday, November 30, 2010
Other than that, we're basically in a holding pattern until we see the oncologist at Northwestern (next week Tue) and radiology oncologist at St. Luke's on 12/17. I'm a little frustrated because in between getting these appointments set up myself, (and when I do try to set everything up, I'm hammered with a barrage of questions that may as well be in Latin), I'm either having a mood swing, so damn tired I start to stutter, or can't remember what the heck I'm supposed to be doing (which, normally is sleeping but when your doctors put your recovery and care into your hands instead of theirs, there's kind of a lot to be done). Grrrr. If there's one thing I've learned, it's that you need to be aggressive as HELL with the doctors that are taking care of you and / or your family. I'm thankful for the surgeon I had, but that's all he is. A surgeon. He did his job, and now we're being shuffled on to the next guy and let me tell you, whoever the hell it is that does return my calls (from my surgeon's office) when I have questions about this or that, sure does a shitty job of it. If I'm lucky enough to get a call same day, it's never before 6 or 7 at night. Usually later than that. And, she usually doesn't really have an answer for me anyway.
Yesterday I had more blood work done to test the levels of phenytoin (seizure levels or something, who knows). That will tell us how much longer I have to stay on the meds. Today, I've been on the phone with several of my dear friends who have been so supportive and I am at least 2 weeks late in returning their calls. Girls, please forgive me. I've either been too tired, or tied up w/ fam, doctors, or roid rage ;).
I'm playing phone tag w/ my primary physician to talk about when I can go back to work and how soon it will be feasible for me to get through my day w/out napping 3 times a day and not being able to open my right eye (I can open my right eye, but every once in a while, when I'm tired, it gets sticky and sort of only opens 1/2 way... weird, I know). Not sure if I have to make an appt to see her or what. My next follow up w/ my surgeon isn't until 1/10, and I'm sure I won't be able to get in w/ him sooner because getting an appointment with him is like getting an appointment w/ Angelina Jolie - it just doesn't happen unless you're whoever the hell it is that's co-starring w/ her in her latest role.
Sorry for all the inconsistencies in my writing ("with" v. "w/", "appointment" v. "appt"). I suppose I'm just all over the place w/ that right now and know none of you will really care (and, some of you will, you know who you are). ;) Have a great week and hurry up on the Xmas shopping people... Okay, I suppose that's also a little reminder for myself. I'm so not ready!!
Wednesday, November 24, 2010
From here, we wait to hear from the radiology oncologist at St. Luke's (next week) and we're supposed to set up an appointment with the Oncologist at Northwestern (probably within a few weeks but for sure w/in the month). This is all cautionary, we're told, because the tumor that I had is aggressive and these teams want to meet to discuss weather I'll have to undergo any sort of treatments, probably to prevent the tumor from coming back? I'm not sure. Let's just hope I don't have to do any radiation treatment or chemo. I've also got my Tee Dawg on the case, and have my MRIs, CTs and pathology report to take with me so that her "brain guy" and "pathology" guy can take a look.
The bad news: Our furnace might be dead. ;) Okay, I probably shouldn't ever say "bad news" in my updates... Just keeping you guys on your toes. In the grand scheme of things, it's not really a big deal, but when you don't have money comin' down from the sky, it's sort of annoying. Good thing Jake feels confident that he's going to take the pot in all 3 of his fantasy football leagues. The guy is obsessed. Let's just hope the refrigerator sticks to it's guns. For all of you who've ever stepped foot in our house, you know it's ready to kick the bucket. Some people have told us it sounds like a loud, sudden cough, some have said a gunshot, some said a car back firing. It doesn't always sound like that. Just intermittently, right when you're chilling out or all is mellow in the house "bam"! Yeah, it's goin' down.
Stay tuned for more updates. For now, looks like we have A LOT to be thankful for!!! HAPPY THANKSGIVING to you all!!!
Tuesday, November 23, 2010
Last week, I had my follow up C.T., which came up looking fine. I also had my follow up appointment with my surgeon to get the results of my pathology report. The report showed that the tumor was more "aggressive" than they originally thought. Instead of a meningioma, it's actually a hemangioperisytoma (say that ten times fast). DO NOT google that term... Wait for the next update so that we have some firm facts on where we're at with this. I made the mistake of googling it the night after our appointment and had a panic attack because all websites, testimonials and chat rooms say it's cancerous. In fact, one of the chat rooms I found had a girl who asked this question, "My doctor only told me my tumor was more "aggressive" than others. He never said it was cancer. Is it?" This was the exact same situation I had w/ my doctor. The answer is one that would make anyone flip out. (I know, what's the point of telling you not to google it if I just told you the scary part? It's just scary and sometimes conflicting so I don't want you guys to get lost in it like I did). My doctor never said that it was cancerous, he only said the term "aggressive". But he was also only in the room with us for maybe 6 minutes, and when he got up to shake our hands and leave, I was only 1/2 way through my list of questions. You bet your bottom dollar Jake almost ninja chopped him and made him wait while I finished going through my list. But we were so lost and actually wanting to get out of there so bad (because of the last experience we had there) that we hadn't processed a lot of what he had just told us about our next steps.
I'll try to give you the short version as far as our next steps go... First, I had another MRI yesterday. No results yet, but I hope to get them today. They ordered the MRI to see if anything has regenerated (because a hemangioperisytoma is a rare type of tumor that regenerates faster than others). The good news is that my surgeon says he got all of the tumor during surgery, so (and this is my fact / assumption, not his) the likelihood that anything has regenerated since 10/27is low. Because the tumor is one that may come back and can be cancerous (we'll find out more when we meet the specialists) we are going to meet the radiology oncologist at St. Luke's, and an oncologist at Northwestern University in Chicago (we were referred to these doctors by our surgeon). These specialists will review my "case" from day 1 and decide what they believe we should do in terms of next steps (radiology perhaps, possibly chemo, maybe neither if my MRI shows nothing) and from there I'll just have the facts and will continue on having MRIs, well, probably forever).
We are continuing on with our original Thanksgiving Day plans, which is to travel up to Osceola, WI to see Theresa ("Tee Dawg") and her friends and family. Theresa is some sort of genius who works at 3M with other geniuses, including a neuroscientist who studied the brain and various types of brain tumors while in school. Theresa was kind enough to pass my most recent diagnosis on to him on Friday, and he spent the weekend researching it. He also has a very good friend who, believe it or not, is the head of pathology at HCMC (Hennepin County Medical Center). We will be bringing a copy of the pathology report on our trip with us, as Theresa says the head pathologist (sorry, I don't remember his name) might be able to meet with us on Friday. It never hurts to get a second opinion right? Jake also called our primary doctor (who is amazing) today, who explained that although this particular type of tumor is might be cancerous, there's still a chance that my tumor could be benign. We'll know more after we see the specialists. In any event, that was a ray of hope for us. :)
We hope to have the results of the MRI today, at which point I may or may not post to the blog. I suppose it depends on how I'm doing emotionally... And, I tend to forget things a lot lately (yep, even more than I used to), so if you don't see an update, don't panic. Feel free to text or something. :)
Please just send out good energy, think positive and pray (if you do that). ;) That's what we're doing.
More to come...
Monday, November 15, 2010
Now it's time to gripe about the drugs they have (and had) me on. Steroids are done. Thank God... but I'm sure the migraines had something to do with me being tapered off them last week. I say thank God because dudes, steroids make you FAT. Now, let me say that I know what you're all thinking... "You should count your blessings and be thankful that you're alive and not worry about your weight." I know that. I really do. But this is hard and really makes you feel like a pile of dooky. Before this all happened I was in full swing with a new workout routine and was doing weight watchers again. All was good. Steroids make your face puff up like the State Puff Marshmallow man and give you the munchies like you wouldn't believe. Now, I will say that yes, I could've made better choices with the munchies I chose, but I'm pretty sure if I started mowing baby carrots my brain would've said, "Nice try. Now just grab that piece of pizza you idiot."
Not so long ago, I made it a rule that I wouldn't weigh myself anymore because scales are evil and weight, like age, is just a number. Even when I go to the doctor, I don't look at the scale. I look at my feet. My primary doctor's nurse even knows that when I'm there, she is NOT to say my weight out loud because I don't want to hear it. Unfortunately, on Friday when I went to see the doctor, the scale did something annoying (loud beeping sound that threw me into an ICU flashback) and I looked up to see the horrifying 3 digit number. Let me tell you, I was about ready to bitch slap the scale and run out of there. I know this is all part of recovery, and it is what it is. But again, it's frustrating and makes me super self-conscious when I'm "out and about". I told Jake I feel like people are gawking at me, thinking, "Holy tub-a-lub". He gave me the, "Okay, crazy girl" look which helped a bit, but I can't help feeling that way when I am out (which isn't often).
This week I'm focusing on healthy foods, "moderate" exercise (cuz I'm told that's all I can do, blah) and positive thoughts. I am thankful to be alive and for my friends and family and KNOW that weight is just a stupid number. But I also know that I am not a fan of my new muffin top or my "moon face" (that's an actual term used by others who've been on the roids, I saw it on a chat forum when I was feeling sorry for myself).
Now off to my to-do list. Lots of phone calls to make this morning and then it'll be crash time. My anti-seizure meds start messing with me between 9:00 and 10:00 a.m. They usually make me start shaking like someone pumped me full of high diesel coffee, then they make me dizzy, then nauseous, then I pass out (note really, I just go to sleep). Whooo hooo! ;)
Quote for the day: If you don't like something, change it; if you can't change it, change the way you think about it. - Mary Engelbreit
Thursday, November 11, 2010
Since it's almost 8:00 on a Thursday, I'm sure as hell not making any plans to hit up the ER or walk-in clinic. Just thinking about making an appointment for tomorrow to see the doctor AGAIN makes me wrinkle my nose. I know it's necessary to see the doctor(s) as often as I do now, but dude, I'm so sick of clinics and hospitals. So I did some research on home remedies (stop laughing, BMeyer), and found that apparently if I cook an onion in the oven for an hour at 350 (where's the little symbol that signifies "degrees" on your keyboard?), drop the cooked onion in a canning jar (or whatever), prick it so it steams and put it on your ear until it stops steaming, the infection will be "gone". Now, I'm not holding my breath here, but several different sites swore by this so why not give it a try? I literally have nothing else to do. Jake's at parent teacher conferences and Layla's finally in bed.
I'm seriously jazzed to see how hot Jake thinks I am with the smell of onion steam all over me though. And I'm pretty sure the entire house is going to smell like a giant stinky onion. Oh boy, this is gonna be awesome.
I'll post the results. If my ear still feels like someone put a nail gun to my right ear tomorrow, I'll suck it up and go to the doctor. Oh yeah, I can't drive. Anyone want to drive me to the Hartford Aurora Clinic if this onion thing doesn't work out?
Wednesday, November 10, 2010
- Hangovers last more than one day and are straight up not worth the "fun" that causes them.
- My metabolism went on a permanent vacation I think around the time I turned 30, maybe 31. If you see Mr. Metabolism, please send him back my way.
- There's no shame in coloring your own hair... If you don't screw it up, no one knows it came out of a damn box.
- I don't feel like there's any reason to stay up later than 9 (or 9:30 on nights when things get crazy... like when there's laundry to do or extra dishes to be done).
- I've found a new appreciation for the "staycation". No packing, no cabs or airplanes, and just relaxing at home with no worries is sweet.
- When we have our next baby, I might be in the "high risk" category because I'll be fast approaching 35 when the little one is born.
- Professional athletes are starting to look like teenagers to me.
- When someone drives down our street too fast, I mumble, "Man, slow down already, there are kids on this street."
- Sometimes I prefer talk radio to music when driving (well, when I could drive).
- I love waking up early so that I can have coffee with Jake and watch the weather forecast with him. :)
All in all, 33 isn't half bad. My day yesterday was a great one... my great friend Jaimie came to get me in the a.m. and drove me to Target to pick up a few things I've been meaning to get as a gift for my friend's nephew. After that, she took me for a super awesome lunch, and then home for my nap. The nap was very much needed and I slept hard. Then, Jaimie, her husband Jason and their little one Mason came back with pizza for my Birthday dinner! Yummm! Honestly, is there a better pizza than Papa Murphy's?? Layla and Mason played great together and Layla was beat after the Schultz family left.
I did discover last night that there are still limitations to the things I can do in one day since surgery. I need to be napping more and doing less. I ended up with a pretty severe migraine last night, one that was so bad I couldn't move and it eventually lead to tears. :( I ended up finally finding a bit of comfort after I put a few ice packs on my head and taking a few Benadryl to help me sleep (yep, I okayed that with the pharmacist who knows all the other meds I'm on).
Today will be spent doing a whole lot of sleeping. Then, off to the doctor for blood tests and, to get my staples out!!! VERY excited about that. Thanks in advance to my friend Jenny who will be my driver for the day.
Thanks to everyone for all the amazing Birthday wishes!!!
Monday, November 8, 2010
I'm pretty sure most of my day will be spent napping, as I'm tired already. Not sure how that's possible but I suppose I'll blame it on the surgery and daylight savings. Anyone else feel like hunting down the person who thought up this daylight savings scam and scaring the life out of him until he takes it all back and just lets it be whatever the hell time it is forever?? Layla sure doesn't give a hoot that when she's up at 5:00 it's really still 6:00. Last night though, she did fall asleep on my lap on the couch and didn't really wake up even when Jake picked her up and carried her off to bed. So maybe her bedtime will be a bit earlier for a little while?
Nothing exciting to report today besides my oh so exciting to do list. Not that I'm asking for a larger list or more responsibility at this point. The thought of that overwhelms me and I'm very thankful for the fact that I have this time to rest and recover. I'm sure I'll be fine, but sometimes I find myself wondering if I should have one of those necklace thingies that has a, "Help! I've fallen, and I can't get up!" button on it. ;)
Tomorrow is my 33rd Birthday... my slogan for this year: "33 and tumor free!" Maybe I should make a shirt? The Schultz's are coming over for a Bday visit with some dinner, so I know we'll have a good time and that Layla will have a blast with their little Mason Man!
Happy Monday to ya'll!
Saturday, November 6, 2010
Theresa left this morning, after spending 4 nights here completely catering to our every need. And not just my needs... Layla's too. If Layla had to potty, Tee was on it. Needed her p.j.'s on, Tee got it. Had laundry to be cleaned (and man, Layla had a lot of laundry this week because she had 3 accidents at nap time at daycare which means we're sent home w/ pee soaked stuff), needed a snack, a meal, some snuggling... You name it, Tee was on it. She pretty much hung up her mommy name tag at home before leaving Osceola, and put mine on when she walked in the door. Girl, you are amazing. On top of all the mommy duties she took over for me, she was our chauffeur for the week. While she multi-tasked on work calls, she drove Layla and I to the doctor, took me out for coffee (yes, she monitored my intake and only let me have on caffeine blast a day), AND took me for a full on deluxe mani / pedi. We were lucky enough to get the timing to work out for our friend Jenny too, and the 3 of us hit a late lunch after our spa treatment! What a day. By about 3:30 that afternoon though, I was beyond spent. Theresa literally put me to bed that afternoon, folded some more of Layla's laundry and went and picked her up from school for me.
I feel so blessed to have you in my life Theresa. Seems like just yesterday our wolverine husbands introduced us and we partied like rock stars in your old school apartment. I can't wait to make the next trip to the Meyer ranch and nuzzle the boys and see the rest of the Meyer crew. Thank you for everything. I love you!!!
Wednesday, November 3, 2010
The last time I looked at the clock last night was midnight, and I tossed and turned from there. I gave up and came out to watch a DVR'd episode of "Desperate Housewives" at 3:00 a.m., and here I sit now, watching some trashy "Extra" episode and wondering if I should have some toast.
You guys... Is this blogging thing annoying? For me, it's sort of therapeutic, but sometimes I wonder if it's too much. You know, sort of like when you get trapped in a conversation with one of those people who just won't shut the hell up about themselves?? That is so flipping obnoxious. I'm hoping that the fact that you cannot read up on the updates without pursuing the site yourself saves you from some of the "in your faceness" of it all, but please know that if you keep coming out here for more meaningful posts only to be disappointed, I'll understand fully if you want to take a break from my recovery for a while. :)
Ooohhh... I should really go. There's an extended preview of the new movie, "Burlesque" with Cher and Christina Aguilara on Extra... KIDDING. Not a Christina fan in the least. If I saw her on the street I'd give her a high five for being a diva, but I wouldn't go see this movie if you paid me. Ick.
Happy Wednesday! Oh, and a quick follow-up to my last post... Theresa made it here without a hitch last night, and as I walked down our sidewalk to her car to greet her, I saw the tears well up in her eyes. She grabbed me so tight I thought my head might pop off, shook me and said, "Don't you ever do that to me again! You scared the shit out of me!" I told her I wouldn't, and we proceeded to cry it out in the driveway. I knew that would happen. My "Tee Dawg", to the rescue.
Tuesday, November 2, 2010
For some odd reason, today seems like things are starting to sink in with everything that has happened. A few times, I've found myself with tears welling up, overwhelmed with the emotion of it all, thanking God that I'm here in my home, breathing this air and looking forward to driving (in the passenger seat) to daycare with Jake in just a few minutes to see our little blondie running across the playground at us. Not for a millisecond of my lifetime will I ever take another thing for granted. I won't take the playground runs for granted, the moments I spend trying to get Layla to "stand straight" when I'm putting her overnight pull-up on, not even the times when she's fighting me because she "needs to stretch" more in the morning before getting ready for school. Jake is coming out of this whole ordeal pretty set too... I told him last night that I'm fairly certain we will not be fighting about anything ever again. Now, one might argue that again, that statement could be a side effect of my drugs, but people, I'm really not that doped up. I'm only on anti-seizure meds, steroids and codeine. Whoopi di doo. All I really want to do at any given moment is wrap my arms around my lumber jack and tell him how much I love him and how thankful I am that he's my husband.
My dear friend, Theresa (aka: "Tee Dawg", "Tee Money", "Theres'a") is on the road from the far West side of Sconnie as we speak to come stay with me until Saturday. A five hour drive for her... bless her heart. I had a dream last night that when she got here, I cried my eyes out. I have a feeling that dream will see itself to fruition. Poor girl was so worried about me on the day of surgery that she told Jake she fell down at one point, and, made coffee without adding any water.
Recovery is going well. Still slow, and tired, but how's that really any different that before? ;) I'm lucky to be enjoying the comfort of my home, and have been able to rest comfortably in between medicine doses (man, you should see my arsenal... it looks like a nursing home here).
Stay tuned... We are off to get blondie and I promised her ice cream before school today. You thought she had me around her little finger before!!!
Live life to its fullest my friends!!!