Not a good day at work

I very very rarely will have a "bad" day at work. In fact since I started back full time February 2013, there's only one day I can think of that I would call a bad work day. That was the day of a deadline on a big project when the company servers crashed. I was the only one who could do work on a file that was supposed to be shared between myself and 3 other people. So with the deadline looming at 5pm, I was trying to do the work of 4 people.

Today I will call a bad day at work and generally just a bad day. Grace woke us up at 5am saying her ear hurt so I'm tired. I drop off Ellie at her school, Liam at camp, take Grace to the doctor (and wait), pick up the prescription (and wait), give it to her, take it home to put in the fridge, then take her back to camp. So already I'm not in the office until 11:30.

I go to sign in the computer. You know, the one with all my custom commands and settings? It won't let me log in. I try again, same thing. Restart and try again, same thing. Basically, our dedicated IT person spent all day (and probably still is) trying to get the thing just to run. I spent my time on the shared computer, which is great that they have. The problem is that the user profile I've built for over a year is only on the personal desk top hard drive so I have no custom settings on this thing. Every shortcut key I have programmed on my own profile does something different in the base version. Not to mention that the shared computer is not as quick memory wise. It took me 3 times as long to do a set of mark ups than it should have.

*sigh* Tomorrow will be better. Tomorrow will be better. Tomorrow will be better.

The best part of today was that when I stomped inside and said "I'm having a bad day!" Grace said "Sit down and tell us about it." <heart melting>

This woman is a one year survivor!

Happy "cancerversary" everyone! This is not just a celebration for me and my family but for everyone who has supported us in any way, big or small. We have an amazing support group and couldn't have made it through the last year without you. Charles is my biggest supporter and he's been my rock, best friend, and basically a single dad for a while now. Kudos to him and I love you!

We are celebrating today with the news that my MRI scan from two days ago was clear!!

I don't know yet if I passed my test or not. Honestly, keeping up with my family is MUCH more tiring than studying. My last chemotherapy pill was almost exactly 6 months ago. The doctor said it could be a full year before I'm back to my normal stamina. Hopefully by Christmas, I will be back to super awesomesauce mom.

So thank you everyone!

And to make this day even sweeter, I passed my exam! I now have EIT next to my name. 

May update

I haven't written in a while and there's a reason for that. I'm studying for my FE exam and the exam date is May 29th. I started studying in January this year and realized around February 1rst that I needed to spend significantly more time studying for it than I had anticipated. I tried to study a few evenings a week but my stamina was (and is) not good. When I got home from work, I was physically and mentally too tired to retain new information. Studying on the weekends proved to work much better.

Unfortunately that left Charles with the brunt of the family responsibility, which he's basically been doing since my surgery anyway. It's taking a toll on him now though. I know we'll all be glad when my weekends can be focused on family again. I'll still be physically recovering from my treatments but I'll be present more.

My parents have our children in New Jersey for most of the long weekend, which was made longer by kindergarten orientation forcing kindergartners off for Thursday and Friday. We are so thankful for that. This gives both Charles and I some rest. Charles has a long break from caring for the kids. He can go shopping for things he's put off (ie shoes and socks). He can read a book and relax. I can sleep whenever I want. I will be able to study all day for the next three days and then still have time for a date night with Charles Saturday night. Thank you, Mom and Dad!

Then I'll work for a day on Tuesday and took off Wednesday to rest and prep before the test on Thursday. General anxiety affects memory recall so since I have recall issues already, I am trying to take it super easy on the rest of my life. Everything is in the background now until the 30th. It takes about 2 weeks to get the results back. On the 30th, our church is hosting "parents' night out" so we're going to buy a game platform that we've been talking about and saving for since the beginning of the year. We figure it's a good reward to look forward to, a distraction from the wait for the results, and a way to blow off steam in general.

As far as my disease, we are waiting for the next scan. I will get blood work done on the 30th, scan on June 2nd, follow-up appointment with the oncologist on the 6th. No other news or concerns right now.

Happy Memorial Day weekend! And thank you to all our military service people!

Thank you!!!

Thank you, thank you, thank you! I have such an amazing support system of family, friends, and coworkers. You're the best. We raised more than our team goal!!! And there were 12 walkers on my team. I'm just amazed and grateful to have such wonderful people in my life.

Here's what my kids had to say about yesterday (me in parenthesis)

Liam - "I walked a long way. I crossed the finish line at 3 minutes and 7 seconds. I fell down the hill and knocked over Ellie. We raised money to make you feel better." (*heart melted*)

Grace - "I ran in a race around the Capital. (Why?) To raise money! (Why?) To help you. (And to help other who are sick like I was.)"

Ellie - "I fell down."

Another post about my Race for Hope team

I'm going to make another plea for donations for my team on Race for Hope. There's a team page named in my honor for this 5k race that takes place on May 4th. A short term version of my story and a picture of Charles and I are now included on the page. Thanks to some generous donations so far, we've raised over $1100 towards charities that research cures for brain cancer. The goal in the next three weeks is to raise $2000. Join my team. Maybe by the time my own tumor returns (hopefully many many years from now), there will be less invasive treatments available with better results for long term survival. Please help me achieve that goal. I'm currently training for a 5k but I'm still weak and unfortunately will be out of town that weekend for a family wedding. If someone would volunteer to be the participant for my team, that would be amazing. Even a walker would be appreciated. Thank you in advance!


Katie Bevington Team Page

Race for Hope

My family is so thoughtful! Charles' mom, Robin, set up a team for the Race for Hope 5k in DC this May. The donations go towards brain tumor charities and research. If you'd like to help, she is trying to raise $1,000 to donate. You can follow this link:

Team Katie

I was actually training for this one but I will be in Ohio for a family wedding that weekend. I am still so excited and honored to be the namesake for this team! I am inspired to go back to 5k training and do awesome next year. If you'd like to run in my stead, that'd be great too!

Thanks for donating and/or sharing the team page on social media. 

The good news and the better news

I had my newest MRI on Wednesday. The follow up with the oncologist was good news. There's no new tumor growth. The even better news is that the swelling from the radiation has gone down. I've been completely off the steroid for over a month so the fact that swelling has gone down without it is amazing news! We pushed off the next scan for 2 weeks, so about 2.5 months from now. I should know the results the week after Memorial Day.

I'm making progress with my studying for the FE exam. With the testing being done on a rolling basis two out of 3 months every quarter, I'm going to take it towards the middle/end of May. I bit the bullet and enrolled in an (expensive) online on demand video prep class. I'm constantly improving my percentage correct on the practice problems so I think it's worth it and I have access through May so I want to take advantage of it as long as I can before doing the exam. Hopefully once is enough to pass.

Question

Who has two thumbs and stomach virus? This guy. Boooo.

Need to reschedule my MRI that was supposed to be 7am tomorrow. There's no way I can lay for 45 minutes straight. With the state I'm already in during the last 12 hours, they'll never find a vein. I feel so sorry for the kids now. I didn't realize how painful this really is.

Update

It's been a while since I've written. I stopped my last round of chemo first week of December. I'm finally getting most of my sense of taste back. I have dropped 22 pounds since getting off the steroid and having no appetite for food anymore since it didn't look/taste good to me. This is the lowest I've weighed since our wedding 7.5 years ago! It doesn't feel like a "win" though. My muscles are very weak and I still have low physical stamina. I've been trying to do some light weight lifting and other toning exercises at least 3-4 times a week which seems to be helping. If I skip a whole week, I can feel that my muscles are slightly atrophying (is that a word?) again.

The kids have been sick pretty much straight since the beginning of February (since the 2nd, not that I'm keeping track). Right now, we ALL have coughs. Liam's turned into an ear infection and Grace's turned into pneumonia. Ellie is just plain pissed off that she has coughing fits in the middle of the night. So we've gone to the doctor's 3 times in the last week and my mama intuition was right 2 out of 3 times. I could actually hear the gurgling/crackling noises in Grace's lungs when I listened with my ear on her chest. I'm getting pretty good at knowing when it's asthma (wheezing), bronchitis (also wheezing), or pneumonia (the gurgle/cracking noise). Charles and I are both coughing too. I think I'll visit my primary care doctor soon to get refills on my own inhalers. 

So it's been an exhausting 5 weeks. We started the new child care schedule 4 weeks ago. It's a lot more tiring than I expected. I have no time to nap now. I used to come home from work at 4 and Charles would be there so I would sleep from 4-5:30. Now it's go go go from 6:30am to 7pm. I am still having trouble getting to sleep too so that's not helping. I am feeling like my most important needs (Maslow's hierarchy of needs bottom pillar) are not being met. I'm tired, don't eat much, try to get fluids as much as I can. Second tier is somewhat better; I have stability in employment, property, morality, and resources. I have my family, which I'm thankful for, but with them being sick for so long, it's draining my own health. I have panic attacks almost nightly.

Since this post has been mostly negative I will try to think of some positives. I'm improving my abilities on the FE exam studying side of things. I've figured out that I retain much more if I study first thing in the morning on Saturday and Sunday than trying to do it at 8 pm on a week day. I'm improving my scores on practice problems. It's something I'm doing that feels like is just for me. We have amazing health insurance. We don't pay anything on most medications and my MRIs are free. Urgent care (which we've used lately) is less expensive.

Speaking of MRIs, I have my next one scheduled for Wednesday and then the follow up with my oncologist the next week. I will update once I know about that. This is the first one since the month after stopping. It should be a good indicator if it's growing back quickly. If it's a slow growth, I'm not sure they'll be able to tell. I've been having more headaches, but I'm not sure why. It could be medication changes.

Arg!

It's one a.m. and I'm still awake even after several rounds of meds. I keep getting these waves of steroid with drawl; terrible headache, itching, not sleeping, scar hurting, followed by too much sleeping. It's been a month now since stopping the steroids, eight months since the surgery, and two months since the last chemo. I want my body back!!

End of chemo for now

There is no solid evidence that chemotherapy is effective in prolonging time before brain tumor regrowth. Surgery and radiation do. It's unknown if chemo does.

With no scientific proof of effectiveness, no tumor to measure on my scans, and the fact that my quality of life is shit when I take the meds, I've decided to stop all together. Two of my 3 specialists agree, including the one that prescribes the meds. Neurological symptoms have persisted and may never fully go away. The main one is a change in taste. At first, everything tasted awful, even my beloved chex mix. Now I can enjoy some food again but it's hit or miss. Most days I force myself to eat a normal lunch and dinner. I have a hard time cooking for the family because I look in the pantry and nothing looks good. 

I've lost about 20 (unhealthy) pounds since the chemo in December and dropping the steroid in early January. It doesn't make me feel good to lose it. I originally wanted to be at this weight after training for a 5k last summer so this kind of loss just makes me physically feel weak and also bummed about not running. I can walk a mile but I can't run.

When there's regrowth (not "if there's regrowth" with my disease) we will have the options of another form of radiation like gamma knife or stereotactic, another surgery, or chemotherapy with the same type of drugs as before. I'm hoping for option D; a better drug with less side effects that is FDA approved in the meantime. 

One radiologist seemed to think my tumor was slow growing over the 6 years between scans so we're hopeful it will be at least that long or longer before it affects me again. We are going to be vigilant with frequent scans and meetings with physicians often. I am still regaining my strength and stamina for... life in general. I'm sleeping a lot still. Doctor said it could be 3-4 months or even up to a year to feel like myself. In general, I'm sick of feeling sick. I'm happy I'll be able to start feeling better.

This medical decision came just before a major family change (didn't affect my decision). Our nanny is moving on to another family. She's been so good to us, but we have to say goodbye at the end of this week. We found a daycare for Ellie that we really love. Bigs will be in school before care for 3 days a week. 

We are now a two car family again. I won't brag about how I got almost $2k off the price of the car. Oops, too late ;)

Waste of time

Well, I had to take a full day off work, drive an hour and a half each way in heavy snowfall, wait for another hour and a half in the waiting room, just to spend 15 minutes (or less) with the surgeon. He gave me the impression that he didn't really remember me and he took all of 4 minutes to look over my chart. It was very frustrating. At least he's going to take my case to the tumor board on Monday. 

Also, my other doctor delayed my appointment from today to Friday so I'm not sure I'll have the meds on time to start next week. 

All in all, yesterday was very frustrating and seemed not worth the effort. 

Hello again

I had another MRI scan that came up the same as last time, stable! I don't know anything more than that. It was just a nurse that left a voice mail for me. I had copies of the reports sent to all my doctors. I have 3 specialist visits next week and Charles is going to two of them with me.

I've been off the steroid for about 10 days. I used to eat all day long and not sleep. Now I sleep all the time and can't eat much. I'm so ready for my body to level itself out.

In family news, we're 100% potty training Ellie this weekend. Charles has Monday off so a 3 day weekend was a good chance to do it. She's ready, but she refuses to go and screams for a diaper. So we're going the old fashioned way; naked. I know it could/will be messy, but it's time for her.

Grace and Liam did their power point presentations today. Yes, you read that right. Our kindergartners made a power point presentation, 4 slides long, stood up in front of the class, and presented their favorite meal. It was EXTREMELY adorable and I'm SO glad I could be there (I wish I could say the same for my phone/camera!).

Bye bye evil steroid

I took my last steroid pill yesterday morning so I am having the expected itching, headache, and insomnia. Hopefully it'll be done soon so I can feel better!

I skipped my last cycle of chemo. I didn't want to literally start the new year with it (supposed to start on New Year's Eve). The next is tentatively scheduled for January 29th. I have another MRI and a few specialist visits set up before then. I have had a change in my ability to taste foods like I used to, which is concerning. 

Other than some insomnia induced fatigue, I feel pretty strong right now. I've kept up with my walking and I have been disciplined with my study nights, even sacrificing watching Downton Abbey for 4 nights after air date!

Hair! And meds.

I know it's been radio silence for a while. Christmas as a mom is very busy and stressful. 

I was originally supposed to start the next round of chemo yesterday (new years day) but that just didn't seem right. I'm still stepping off the steroid, which gives me side effects so I didn't want to compound that. And overall, my body just needs a break. My symptoms last time were more severe and lasted longer. I'll be doing another MRI in a few weeks and restarting the next round on January 29th.

In happier news, my hair is really starting to come back. It's almost to the point where I wouldn't feel embarrassed bare headed in public!

Happy 2014 to you all! This year can only get better for my family, right?

Early December update

Last week's chemo was pretty rough. It was a higher dose than the last time. I didn't have the almost debilitating fatigue like last time, but the nausea was much worse. I used my anti-emetics the same way as last time, only one at night before the chemo pill, but I should have used it every 8 hours as the doctor suggested. I didn't catch it in time and spent the last 3 days of the cycle throwing up and not eating or drinking much. That made the start of my work week hard as I felt really weak from dehydration and lack of food.

The first time, my symptoms resolved within 24 hours of taking the last pill. This time, the nausea continued for over 4 days past the last pill. Food doesn't taste the same. At first, I thought it was the nausea that just made me disinterested in food, but now that the nausea is gone, I'm more worried about my change in palate. Foods that I KNOW I like don't taste good anymore. I don't know if that can be a side effect of the chemo or not, so that's something to ask at my oncology appointment tomorrow.

I also am stumbling over my words a little more. I've noticed it most at the ends of sentences, forgetting more words for things, and when I'm reading out loud to the kids.

I stepped down the steroid again by less than usual. I'm currently at 1/4th of my original dose. I'm at the sleeping poorly so I'm tired stage. I can't get to sleep quickly at night. Last night, I was up until 2am and got up for the day at 6:30, so I'm sleepy today for sure. The step downs also make me itchy, which I think keeps Charles up at night too, so I feel badly about that.

Busy weekend coming up so I'm trying hard to get more rest. I took a nap after work. I hope that doesn't back fire and keep me up tonight. 

Christmas card addresses

While I have some time to sit in bed and read, I figured I'd make myself useful and address our Christmas card envelopes. We have addresses from our wedding, 7 years ago! But could probably be updated. We're saving return labels as people send us cards but so many people sent me comfort cards in the last few months and I want to include them too. Coworkers and direct family members will probably be handed the card personally but all else will be mailed. 

So anyway, if you've sent me a card in the last six months, or just want one from us (its pretty darn cute), email me your mailing address. Katie dot Bevington at gmail dot com. My goal is to send out by next week. We're including a letter too along with the pics of our cuties cause a detailed public blog isn't enough, haha. 

Love you all!

Not much of an update

Stepped down steroid again on Tuesday so I'm now feeling the headache and itchiness that comes with the step down. At least this time, the headache doesn't feel as severe and took longer to arrive. At least it waited until AFTER Thanksgiving. I'm anticipating the fatigue for a few days from now :( but hoping it won't be as severe either.

I start the chemo again next week at a higher dose and taking off Wednesday through Friday.

In better news, I have stubble starting to grow on my bald patches! You can't tell unless you're about 3 inches from my head since it's super blonde and *very* sparse, but it's something!

First Post-Radiation MRI

I had my first post-radiation MRI brain scan today. It was at 7:15am (YAWN!) so I am pretty tired. Not too tired to go out to dinner with my mommy friends... to celebrate! The nurse called me at 2:30pm (holy turn around time, Batman!) and said "The doctor doesn't like to wait when we have good news for patients. Your scan looks stable." Woooooo! That means nothing has changed since the last time, which is fabulous. Now we just need that call every time!

I ordered all my FE exam prep materials so this just got really real. I have no more excuses to put off studying. I will have to set aside nights as "class" so I will actually do it. Or take a few hours on weekend days and go to the library BY MYSELF. April 2014. Pass FE exam. This WILL happen.

I've also been walking more, which feels really great. So far it's been about 2-3 times a week the last couple weeks. I may get derailed by steroid headache this week (oh and Thanksgiving!) or chemo next week, but I think it's important to keep it up anyway, even if I'm bone dead tired. Weds-Fri on chemo week I've taken off work but we'll still have the nanny, so I have NO excuse not to use my good energy 2 hour window between naps to take a half hour walk.

I'm still tired a lot but not "doze off at a stop-light" tired. I think my body is finally getting used to the lower dose of steroid, just in time for another step down tomorrow, ugh. I only have a few more several-day headache then huge drop in energy step downs! Off totally by Christmas!

About a month ago, I ordered myself something from a small etsy business, as a compliment to a necklace from a friend and a gift to myself. It came earlier this week, just in time for the scan today, stepping down steroid (and resulting several-day headache) tomorrow, and chemo again next week. It says "Be strong. Always." and has a heart on the inside.

Sleeping and tired at the same time

I'm sleeping MUCH better at night now, despite that one bad night Monday night. I'm also much more tired during the day. I think they're both related and due to the drop in steroid dose. It helps me sleep but it doesn't give me energy during the day anymore either. I'm just waiting for all this to level out still.  I almost nodded off at a stop light on the way home from work today. Charles has agreed with me that we'd both rather I pull over somewhere for a power nap than try to "push it" home.