Happy news from the oncologist

I’m happy to report that my MRI brain scan from Monday was stable and no evidence of disease. The oncologist and I are both very happy with the results. He even used the word remission and is confident that the treatment I had last year will keep it from returning “for many years, if ever”. Although there are no studies on cases like mine to help predict my prognosis, he did talk about writing up my case for a medical journal in the coming years (maybe 5 or 10) for other young adults in my position to be able to read. 

I took my last chemotherapy pill one year ago today and have gained back about 95% of my pre-surgery energy and stamina. I will continue to have monitoring scans every 3 months for several years and then about every 4-6 months after that.

Our little family had pizza, sparking apple cider for the kids, and wine for Charles and I as a dinner celebration. We told the kids about our good news and they asked any questions they had. We have a busy weekend planned with a birthday party, tree decorating, and cleaning the bathroom (guess who's doing that).

Happy Holidays everyone. I got my wish early!

3 Month Update

Well this is a happy update. Not only am I coming up on one full year since my last chemotherapy pill, but I got a stable scan on Monday! That means no new growth, everything is the same. There are still post surgical and radiation changes but they have been the same since June and October 2013. This is exactly the news we hope for every time. I was nervous this time since I had a migraine a few weeks ago but it turned out well. Thank goodness my intuition was wrong this time! I have a follow-up appointment with my oncologist on Friday but I fully expect that we will go another 3 or 4 months until the next scan.

And also, we recently paid off the last outstanding medical bill. We're very excited about that. It's taken 16 months but we did it.

Congressional Advocacy for Brain Tumor Research Funding

Lainey Titus Samant, Associate Director of Public Policy for the National Brain Tumor Society, writes:

Last week, members of Congress returned to Washington, D.C. from their home districts following the November elections. Will you welcome them back and ask them to take immediate action in support of critical medical research funding? 

Research funded by the National Institutes of Health (NIH), including the National Cancer Institute (NCI) and National Institute of Neurological Disorders and Stroke (NINDS), is critical to advancing treatments for brain tumor patients. Together, these institutes are the largest funders of brain tumor research in the country, and their funded projects are working to discover new ways to treat and eradicate brain tumors. Yet, biomedical research is complicated and takes many years, and thus needs a consistent and reliable funding stream. 

Although there is support in Congress for a well-funded NIH, the budget process is a cause for concern. In September, Congress continued the trend of recent years by forgoing the full budget process in favor of a temporary spending bill, known as a continuing resolution, or CR. The CR extended government spending from Fiscal Year 2014, which ended on September 30, until December 11, when Congress will either pass a full budget or an additional CR. When a CR is passed, no increases are made, and this year a slight cut was made to the NIH, including NCI and NINDS, through the CR. 

It’s time for Congress to pass a real funding bill that includes an increase for the NIH before the December 11 deadline. Ask your member of Congress TODAY to put an end to temporary fixes and pass a comprehensive funding bill for Fiscal Year 2015 that includes an increase for NIH, including NCI and NINDS.

Katie Bevington, survivor of grade 3 astrocytoma, adds:

If you'd like to sign this form and send to your own congressional representatives, please click this link. It only takes 5 minutes.

I personalized my letter with a paragraph about my own experience; I am a grade 3 astrocytoma brain tumor survivor and mother to three young children. I was lucky this time that my surgeon could remove most of the tumor but I know eventually it will regrow. Having already been through the extremely difficult radiation and chemotherapy treatments already, I want to know that there are better treatments available next time I need them. Please fund the NIH research programs.

Love, Comfort and Safety

I've been doing meditation daily through my headspace app. It's been extremely helpful. I'm less anxious, more calm and patient with the kids and sleeping better. Right now I'm making my way through the "appreciation pack" that has 10 minute guided meditation that focuses on how to appreciate what you have in your life. It's more than just listing what you are thankful for. It's more about the emotions behind those things.

After reflecting on my life, I know I'm thankful for so many things. But what it boils down to is love, comfort and safety. I have so many people who care for me, think about me and love me. I have so many people that I love and care for. Those people create a feeling of comfort for me, not only in times of need (which I've had a lot of recently) but also in times of stability. I've been cared for with so much love that it's comforting when I even think of it.

Safety is a little broader. I feel safe talking about anything I need to with Charles, which also provides comfort. I know we will always have a roof under our heads and food to eat. I have a feeling of safety with my job and career. I know our children are generally safe and happy (even if there's a small fear of a school shooting happening). I am currently "no evidence of disease" and I have an excellent medical team should that change.

Overall, I'm very happy these days. I have so much to be thankful. Of course the best time to reflect on that is 1 am. Ugh!

2 month update

I had blood work done Monday, MRI Wednesday and follow up appointment today. The MRI didn't go as smoothly as usual. The vein in my arm blew out and contrast got under my skin. It's the most painful needle stick I've ever had, hurt all day. The good news is that it was worth it. There are no changes in my brain. My white blood cell count and platelets are both a little low but I was reassured that was nothing to worry about.

My fatigue has gotten markedly better in the last month. I'm completely off one sleep medication and down to a 4th of the original dose of the other. My sleep is much more restful now and meditation is helping me get to sleep quick and probably helping me sleep through the night.

Next scan in 3 months.

Relaxation and Meditation

I went to a one hour presentation at my young adults with cancer group. I'm now a believer. This guy was previously a high school science teacher so he comes at it with a scientific mind and explained why different things get a mind/body response. This presentation was about techniques so it wasn't just sitting there breathing. We did the hippy dippy stuff like chakras but also pain management, focus, and rhythmic breathing. It was very interesting to hear about the body's stress levels and responses with each exercise. Even after just an hour, I was so relaxed. 

Yesterday I had a cup of coffee and a coke. Last night, I didn't take any sleep aids and cut my xanax in half. I did the techniques before going to bed and was asleep within an hour. I know that doesn't sound like much but it's a huge accomplishment without my medications. Usually it takes hours even with the meds sometimes. I wish I could attend his classes but they're at 11am on Thursdays which isn't really possible.

Anyway, no new medical news. I'm just hopeful this will help me sleep better!

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!