Winter Wonderland

Even Duds wanted in on the action. This crazy mutt loves the snow. I am pretty sure he had icicles coming down his chin. Crazy bastard. ;)




This one is after she was inside and warmed up. Very proud of herself, snuggling w/ her baby (who she insists on keeping her naked all the time).


Love these pictures... This was the weekend of the big blizzard. Jake had lots of shoveling to do and Layla said she wanted to help. We were amused by this, since the last time we bundled her up for a day of fun in the snow, she took one digger and got a tiny bit of snow in her mittens and it was all over from there. She wanted to go inside, have some juice and watch Sesame Street. We tried to push her to toughen up, "get back on the bike", etc., but that little stinker just wouldn't stay outside with us. So when the snow was falling like a mother this time around, Jake and I sort of giggled when she said she wanted to play in the snow. But she did it. She played with Jake and trudged through the snow and had a blast. She was so cute in her gear all bundled up. Reminds me of "The Christmas Story" where the younger kid (why can't I remember his name right now?) is so bundled up he can't put his arms down. She didn't look super enthused in the picture by the tree, but that's because she was playing the "serious" game with me. Also known as the staring game ... she tries to stare me down and whoever smiles first loses. Too funny.

Thanks for letting me count on you

Said best by Bruno Mars... Here's my thank you to all of you who've stood by my side over the past couple of months since, well, let's just call it "Drop Day" (because all I remember about that day is dropping to the ground like a ton of bricks). Take a listen (Count on Me, Bruno Mars):
http://www.playlist.com/playlist/additem/816029201

Most of you know where we're at now in our journey, but for those of you who don't, I'll give you the super short version only because as selfish as it might sound, reiterating this starts to wear on me and sometimes I just want to stuff all the info, fear, worry and all that comes w/ it into a huge trash compactor. With that said...

Last week Tue we met w/ Dr. Raizer at Northwestern (Robert H Lure Cancer Research Center). He confirmed the big question, which was does "aggressive" mean cancerous? He said that yes, it does. Before you grasp your chest and gasp for air, please remember that the tumor, Thank God, has been removed. But this type of tumor (hemangiopericytoma) is very rare and very aggressive. So, Dr. Raizer's recommendation is to go ahead with radiation treatment. First, he wants me to have a bone scan and CTs of my chest, abdomen and pelvis. This will show us whether there are any traces of anything anywhere else in my body ("hot spots"). After that, I'll have another MRI so that the doctors in Chicago who reviewed my case can get a more clear picture of my brain (the last MRI from 11/22 was still not 100% clear due to surgery). The next MRI will then help the doctors decide which type of radiation I should get - gamma knife, which is a one day procedure that pinpoints one specific area or "regular" (I don't know what it's called dudes) radiation that treats a larger area.

Right now, my days are spent on the phone, scheduling appointments, asking questions, transferring records, explaining my "case" since day one, and making decisions (lots of which I'm not sure are the right ones). It's like having a new job, really. And let me tell you, the job I have at Wells is WAY better. I am lucky if I get one day where I am not on the phone or email w/ some sort of medical person (yes, email. Dr. Raizer actually gave us his personal email addy). I'm thinking about someday becoming a health advocate where I can stand by people who are taken off guard the way we were with some sort of health condition, and have never been through all the nitty gritty that comes w/it. Because I know that when this all started I just listened with wide eyes and nodded. Not now people. Now I'm bossy (right, right, I know, not very different than before, but this time, I'm talking fire out of my nose bossy), persistent and sometimes a little irrational. So if you or anyone you know is going through anything like this, and they want to chat about how to get what they want from doctors and anyone / thing relating to the medical field, just let me know. It's called march your ass into the office / facility and say, "Give me my records and all the other shit you have and I'm making sure they get to the right place." (Thanks for cheering me on, Jenny.)

With all of that said, I'll leave you with this (so you don't think I've lost it or am someone other than myself): Please don't think that as my friend or fam member you cannot talk to me about your life. About the everyday things that are happening with you. About the fact that your week has sucked a big one because your furnace broke, your husband (or wife, back off dudes) is being a neanderthal, you have a ton of shopping to do, your kid is being a misfit, etc. Hearing about your every day lives is helpful for me. I'm finding that some people think they can't talk real w/ me because of what's going on and to be honest, when you give me the edited version of your lives, I want to return it and pay a little more for the unedited version. That's why they're always priced higher and are way better, right?!

Please go out and have a drink or a shot or something for me (cuz I can't until like flippin May). While you're at it, crank this one up. It's one of my favorite's right now and Pink is on my list of people to meet. :) Raise Your Glass - http://www.playlist.com/playlist/additem/1674791953

(For our mature audience, you can just copy and past the URL links noted above into a new browser window and hit enter. Find the song I'm leading you to and click on the little play button; also known as a sideways triangle.) ;)

Christmas Tree Farm

Yesterday morning, The Sherman's made their annual trek to the Christmas tree farm in Hartford. This place has is a gold mine... They sell trees (obviously) but take you out into the field to pick your own tree. You can tag it and have some dudes come chop it down and bring it in for you, or, if you're married to a lumber jack, you can take one of their saws and have your husband chop it down, then trim the ever loving crap out of it right there in the field and drag it in. Then they mark your tree and tote you and a bunch of other frozen families back to the starting line for hot cocoa and maybe a glimpse at Santa. Layla was lucky enough to get to sit on the tractor with Santa because, believe it or not, daddy is friends with Santa!!

I was so happy to be able to get this tradition in this year. Things have been so busy with doctors appointments, recovery, and Jake's hunting schedule. I wasn't sure if we'd be able to go all out this year. Then, after I tried to get Layla out yesterday to at least make a snow ball with me and she had a meltdown because she didn't like the cold, I wondered if we should even go (okay, and also because I didn't want to freeze and was tired even though it was only like 10 a.m.). But Jake made it happen and it was great. We all came home and crashed for the afternoon. I'm still burned out from that extravaganza, but I'm happy we made it happen.

Off to Chicago to see the oncologist tomorrow. Wish us luck. We will have lots of information after the appointment and I'm hoping it's all helpful and good. Wells Fargo friends, I will be in touch as soon as possible to be sure no one is doing my job better than I did and hopefully give an update as to when I'll be able to come back! :)

Tick tock, tick tock...

Our Thanksgiving was a good one... Thanks to the Meyers for hosting us and tolerating a 3rd kid being added to the mix. Also, thanks again Theresa for linking us up with Brian and his friend who reviewed my pathology report. From what they say, everything looks really good and they said they'd be surprised if either of the doctors we're seeing over the next couple of weeks recommend radiation or chemo. I suppose they're just sending us their way to take precautionary measures in case the tumor does decide to come back (which, it won't because I won't let it).

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!!

Good News!

Last night, at about 7:30 (oh, yes, they made me sweat it out for a full day and a half), St. Luke's called. My doctor's physician's assistant was the one who called me. I honestly think my surgeon does like 5 surgeries a day and works minimum 12 hours a day, because she said he had not yet seen the scans as he was in and out of surgeries all day and / or at other clinics for appointments. So, she took a look at the scans herself, as well as the report. She said, that from what she can see, the only "abnormalities" are regular, post-op ones. There were no masses visible on the scans! She did mention something about fluid, but again, I think that was related to surgery. When she was reading to me from the report, I remember thinking, "Okay, that's good. And that's good too." But, I no longer have a short term memory so I can't exactly reiterate what the report said (and Jake was at night class, otherwise I would've just put it on speaker and let him retain everything like he usually does). She did say that of course, Dr. Ahuja will have to confirm everything she told me after he has looked at the scan, but I'd think that if there was something that was "in your face" on the scans, she would know it. And the MRI itself was the longest of the 3 I've had in the last month so I think they were scanning every last bit of my dome. I also had to have some sort of injection half way through so they could see all the vessels clearly, so that makes me think the scans should be pretty clear.

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!!!

Update

Hey everyone... Sorry for the delay in blog updates. I've been pretty tired and am just now feeling alert enough to type. Oye! Thank goodness for caffeine, right? Here's our latest update:

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...

Onion verdict... and some other stuff

I'm not sure I can provide a true verdict on the onion home remedy. I gave it a shot, and the only results I ended up with were a stinky house, stinky face, and stinky hair. I still had ear pain on Friday, so made a doctor's appointment (thanks for the ride, Tasha). My concern was that I'd get there and the doctor would tell me, "Uh, no, you don't have an ear infection dummy. You just had brain surgery, and the pain is a result of your skull being cracked into right by your ear." I pretty much hit the nail on the head with that premonition. No ear infection, just pain caused by pressure that I'm having in sinuses and eustachian tubes from a cold I have. Yippeeee! So there's nothing I can do about it except snort my nasal steroids that I was put on a few months ago because I have chronic sinus infections. Had I been following doctors orders with the nose spray prior to Friday? Of course not. Why? Because nose spray sucks. But, if it's going to prevent issues like this, I suppose I should start listening. My ear is starting to feel better and my headaches, for the most part, are starting to get a tad better. Although, I have noticed that every day since last Tuesday I wake up with a killer headache (not just in the a.m., also after any naps I take). I think it's because there's added pressure in my brain when I lay down (Jake said when we were in the hospital, the monitors that I was hooked up to always showed higher "pressure" numbers when I was laying down at anything less than a 30 degree angle). So, I'm pretty much sleeping sitting up these days.

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