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.

Urg

Jinxed myself. "Last night" was awful. If I said I got 4 hours broken sleep, that would probably be generous. Unexpected schedule change today has me anxious. Then when I'm restless, I worry about keeping C up and that makes it even harder to fall asleep.

Better luck tonight hopefully. 

Sleeping finally!

Not too much to report so far this week medically. I have another appointment this Wednesday to check my blood work and order the next round of chemo meds scheduled to start December 4^th. My first post-radiation MRI is a week from today, the Monday before Thanksgiving. It’s at 7:15am which means I’ll still be at work on time and for my full 6 hour day, but that makes for a really long day when I’ll be getting up around 6am. I won’t know the results of the scan until I see my doctors the week after; one on Monday the 2^nd and one on Friday the 6^th. I might know earlier if there’s a severe growth but I highly doubt that and staying positive that there won’t be ANY growth at all. The appointment for the doctor that ordered it is the 6^th, but the one on the 2^nd requested a copy of all reports so hopefully he’ll tell me then.

The best news of all, I’ve started sleeping at night!!! I can’t express how excited that makes me. We visited my parents in NJ this weekend. Friday night, I slept for 10 STRAIGHT hours!! On Saturday night, I slept for 8 straight hours. Then yesterday, I took a nap for 1.5 hours at their house and three 20 minute naps in the car on the way home. Last night, I slept for 7 straight hours. Right now, what’s working is a nightly cocktail of anti-anxiety medication, a cortisol-suppressing over-the-counter supplement, and an ambien. I don’t like that it takes a combination of 3 medications, but hey, I’ll take the sleep, right? 

I also am currently at half the dose of steroid from when I went back on it the week after my last radiation treatment. I had a headache for 4 straights days when I stepped down on Tuesday which finally started to lessen Saturday morning, so it’s helping that my body is getting used to the lower dose and maybe it’s finally low enough that it’s not disrupting my sleep as much. It’s interesting though, even though I’m sleeping so well the last few nights, I’m actually really tired today. I think I’m just so low on sleep cumulatively that a few nights can’t make up for it. Hopefully, this good nighttime sleeping can continue so I can catch up and finally feel back to as close as normal as possible.

The plan is still to step down the steroid dose every other week so I have 4-5 days of headache and at least a week without. I’ll be off all together by Christmas!

Hematology oncology appointment

Pretty quick update this time. My blood work numbers look fine a week after the first chemo cycle. Woot! My platelets are actually higher than last time (still a little under normal) and white blood cell count is fine, so no extra worries about getting sick.

Sticking with the current plan to wean the steroid. I stepped down again yesterday so I'm in the middle of my 3-4 day withdrawl headache. Boo. But I should 100% off the steroid by Christmas!!

Conclusions about chemo week

For those that aren't familiar with the "standard of care" for brain tumor treatment, it's 5 days of oral chemo pills followed by 23 days break. This 4 week cycle continues for at least 6 months. Some people continue it for years if it's working for them and their bodies tolerate it well. For me, I will probably end up with a "clean" scan at the end of the this month and then every 2 months (fingers crossed), so these 6 cycles will be it for me at least for a while. This particular cycle was about 2 times the dosage of the pills I took for 6 straight weeks during radiation. Next cycle it goes up by another 1/3rd and stays at that dosage for the remainder of the cycles, which are scheduled be done by April next year, barring any medical necessity to delay any cycles.

I was unsure of how I'd feel with these meds. During the radiation and chemo, it was unclear which treatment caused which side effects. It was obvious the severe headache and non-stop vomiting was due to the brain swelling from the radiation as that went away quickly with steroids. I had even planned to try to work a few hours a day during the first few days of the treatment, which was a mistake. I've learned from that already. I don't WANT to take time off for this, but I do need to take care of myself.

Luckily, the side effects for me haven't been intolerable, hard yes, but manageable. I take the pills as directed: no eating an hour before or 2 hours after, take the anti-nausea 30 minutes before, take the chemo directly before bed. If I can't get to sleep right away (which happened a few times), the side effects are more noticeable. I get quickly changing hot AND cold flashes, heartburn, headache, and nausea. I ended up just wandering around the house (sometimes writing blog posts under the influence of sleep medications) and playing useless games on our various electronic devices, before retiring to bed (either my own if we have company, or the basement twin bed we have for company when there isn't someone there already). If I can get to sleep within an hour, it's obviously a lot easier. And I've actually been sleeping for long stretches at a time!!

The daytime side effects aren't terrible either. The biggest one is fatigue. I've been taking at least one nap a day, sometimes two. I tend to feel refreshed for about 2-3 hours and then start dragging again. I limit how many stairs I do because those seem particularly hard. I sit around a lot and can't really play with the kids, just cuddles and reading books. And actually, I seem to get winded reading aloud long books which a bummer. I have noticed that by about 22-23 hours after taking the last pill, I start to get my strength back and can do stairs at a normal pace again. That gives me hope that it won't be lingering effects every month so I can get back to my relative "normal" pretty quickly.

I go between being really hot and really cold all day long, although it seems to lean more towards cold. I've been wearing sweats, a thick hoodie, and a winter hat most days. It doesn't help that it's gotten pretty cold here lately, although I wouldn't really know since I haven't been outside in 48 hours!

Luckily, I haven't had nausea (unless I can't go to sleep right away). I have only had to take the anti-nausea right before the pill at night instead of every 8 hours like I could be and some people do. My appetite is not as good, but that's actually probably a good thing since it was high on the steroid anyway. I don't crave any foods and if you ask me what I want, I probably wouldn't be able to make up my mind. But if you put something in front of me, I'll eat it and it tastes good to me.

Speaking of steroid, I get to step down to a slightly lower dose this week too. Woohoo! I get my blood work checked Wednesday to see how my body is tolerating the chemo. And we have a weaning schedule for the steroid that will have me off it completely by Christmas.

Two of the three kids are sick so I'm expecting that to hit me later this week. Hopefully my white blood cell count will be holding steady so it won't be too bad.

There's a lot to be thankful for this week, too. Support army is still being amazing. We have a fridge FULL of food from kind friends and family. We are stocked for meals for the whole week, which is awesome cause usually Sunday is my batch cooking day for the week. My mom came for the weekend last minute and has been extremely helpful. She's unavailable the next two cycles though so we'll need to ask for help from other sources in terms of helping Charles care for the kids.

We have some nice folks who have offered to watch them for us on Tuesday nights so we both attend our respective support groups ("young adults with cancer" and "cancer caregivers"). They may not be in bed by the time we get home (45 minutes after their normal bedtimes) but that's not a big deal once a week. If anyone knows of some high school-ish aged girls (or anyone really) who want to come play with them Tuesday evenings, we'd be grateful :) The support groups offer so much emotionally and it's so worth it to go.

Being nicer to myself

Okay. I'll wave the white flag now. This is harder than I expected. I'm grateful I'm not nauseous, at least I have that on my side. The only thing that would make this worse is throwing up, especially in the middle of the night. And also on my side, it's oral pills so I don't have to sit hooked up to an IV in a doctor's office. However, this fatigue is killer!

In my mind, I was thinking "I took this same medication for 42 days straight. How much worse can it be at a higher dose?" Uh. SO much worse. And the best part *rolling eyes*, the next 5 cycles will be even HIGHER.

I had every intention of continuing my plan at work. I'd go in, work until I just couldn't anymore, and then go home. I love my job, my company, my coworkers. I try to do my best at everything I do. I'm pretty hard on myself when it comes to stuff like that so I push myself, sometimes past my breaking point. This is one of those times. I've finally admitted, I just can't work while I'm doing the chemo.

I do have to say though that was I was pretty proud of myself for making it through 4.5 hours of a scheduled training this afternoon. I was even clear headed enough to follow along, ask valid questions, contribute to the conversation, and learn a lot. I attribute that to my 7.5 hour straight night sleep (first time in months) and the 2 hour nap I took later in the morning.

But from here on out, Wednesday through Friday on chemo weeks are off from work. I'm not planning any extra curricular activities for the full 5 days (and maybe the Monday after too); no friend dinners (mom friends for me), no dates, no running errands, no shopping (gasp), no exercising (not that I was anyway), no dishes, no laundry, no cleaning. Basically, I'm putting myself on lock down, putting myself first, making sure I can heal so that when these 5 days are over, I can get back to life again.

We appreciate that people have started bringing us meals again. Please continue to do so. I'll keep the care calendar updated with the weeks that we'll need them. And most of all, please help support Charles. He's amazing but he's going to get burned out too. He needs help with the kids especially but also keeping up the house, and with emotional support. Even from afar, you can call or email (after 8pm please).

Chemo sucks

Let me start by saying; my, how poignant I can be in the middle of the night high on ambien! I will be 100% honest and say I actually don't remember writing most of it, so that was completely from my subconscious.

And also, note to self; "save as draft" to reread later before publishing a post in the middle of the night.

To the point of this post though. I've only had the first pill of my chemo last night. Today was pretty rough. I didn't sleep well last night (you can tell by my 1 am thankful post). Thankfully, I'm not nauseous. I take anti-emetics for that. Morning routine with the kids was not too hard and everyone got off to their places on time.

I'm just TIRED. When "they" say it can cause fatigue, they don't mean the "I didn't sleep well so I'm tired" fatigue. They mean "shit, I can't walk up these stairs" fatigue. It's intense. With 2 cups of coffee, I pushed myself through 2.5 hours of work this morning to finish up a project from yesterday and then, by some miracle, was able to drive myself home safely. I slept for 3 hours and woke up semi-refreshed.

Tomorrow, I'll be trying to make it through a training from 1-5pm. I'm hoping that by taking a nap in the morning after the nanny gets here, that I'll be able to make it through. I cancelled my mom's night out dinner plans for tomorrow night. I will probably have to take some more time off from work on Friday as well. I already told Charles he's basically on his own for the weekend holding down the fort. Read into that: if you want to come hang out and play with kids, bring a freezable meal, do dishes, or fold laundry, that'd be AWESOME!

I had no idea what to expect with this. I still don't. I'm not sure if the fatigue will build on itself and/or linger after I'm finished. I have learned this one lesson though: absolutely no extra curricular activities during chemo week.

My November Thankful Post

I was SO tired today that I fell sleep at 8pm but then it turned to 10pm and my body thought it was nap so here I am awake at almost midnight. Boo. I figured I'd write to get some stuff off my mind. I also already took an ambien so please excuse what might be rambling, misspelled, or punctuated incorrectly.

Some people are using every day of the month to remind themselves of what they're thankful in their lives. I think that's great. I'm sure I could come up with 30+ individual things, too. However, I'm not going to. That's just one more thing on my "to do" list. I want to write about one main thing (that branches into others).

I'm thankful for my health. Notice how I didn't say "I'm thankful that I'm healthy." In fact, I'm obviously FAR from healthy, as evidence by the amount of medications I take daily. However, I'm much more healthy than I was at the beginning of the year.

I distinctly remember my first debilitating migraine. It was early January. I was visiting my parents with just Grace as a special mother/daughter trip so she could go to a Princess Party with my dad. I was actually getting my hair cut and prepping mentally for two job interviews later in the month, after 6 months of applying and getting denied. That headache was the first tip off of my disease progressing. After that, I had repeats of what I call tumor-induced-migraines of various degrees, some of which caused me lay in bed in pain all day, unable to do anything useful or requiring a shot from urgent care.

So I'm thankful for modern medicine and the wonderful medical professionals I've met, continue to see, and will see in the future. I had a walnut size tumor that was invading on critical areas of my brain removed without major effects to any other brain functions. I had a textbook recovery from the surgery and retained all my mental capacities. I've been enlightened to the AMAZING support of humanity: family, friends, coworkers, and acquaintances who have helped us tremendously.

I chose to do the follow-up treatment of chemo and radiation. Other than brain swelling, which doesn't always happen, it went decently well. Yes, it was/is hard but the whole point is to extend my time before recurrence. The silver lining is that I AM getting better every day. There are some days that seem like a step-back, but in general it seems like two steps forward one step back. I am much better off now than I was on June 19th (surgery day) and the day before.

I am incredibly blessed to have retained all my abilities, learned skills, and privileges. No seizures and the ability to drive. It would be nearly impossible to work and help support my family if I couldn't drive myself. I have control over my mental capacities and all my motor skills. Even though I forget names easily, forget some words occasionally, mix up my kids' names sometimes, and have to write down EVERYTHING, I still have a decent memory and remember things from the past pretty quickly.

This version of health gives me hope for a long life. I dream of seeing my children grow into wonderful, moral, happy adults. I want to foster a family atmosphere where they all want to come see us on special occasions and for no reason at all. I want my parents to be alive when my own kids have kids. I wish to grow old with my best friend and celebrate our 50th wedding anniversary. Only 43 more to go! {Charles, 50th wedding anniversary in Greece?} I want to see all the new inventions that will come out. I want drive a flying car! I want to play a video game in a full room of 5 surfaces of game play with your body as a remote (how awesome would that be??). I want cancer treatment to be more effective and less harmful to the healthy parts of the body.

In conclusion, I'm very thankful for MY version of health. Yes, my goal is to get NED (no evidence of disease), to be healthfully fit again and run a 5k, and to be able to care for the kids on my own more easily so it feels like a joy again instead of a chore, but I'm getting there. It's a slower process than I thought, but I'm doing better every week, sometimes day by day.

In short. I'm thankful for me and my road to recovery! Everyone should be thankful for themselves. I'm thankful for YOU too.

Old, but I’m not that old. Young, but I’m not that bold.

Today is my birthday. I turn 31. I have to say, the past year has been the hardest of my life so it can only go up from here, right? Selling our house and moving, starting to work again, tumor and cancer diagnosis followed by treatments, and our bigs starting full day public school. I have half a year of this maintenance chemo treatment and the goal for the year is NED (no evidence of disease). It sounds morbid to think this way, but I’m wondering if every birthday, start of the new calendar year, and summer “cancerversary” will briefly make me think “How many more years do I have left?” This one already has. Maybe everyone thinks this way on their birthday as they get older and hit the age milestones, maybe they don’t. Of course, it leads to all the other “what if’s” like seeing the kids having boy/girlfriends, graduate from high school and college, getting married, and having kids of their own.

I’m still sleeping very poorly. I’m up every couple hours all night and lately been in the habit of being awake from 4-5am. It’s so frustrating. I’m trying all sorts of things to see if it helps. So far, I’m blaming the steroid. Directly following my surgery, I was on so much of it that I couldn’t sleep more than a few hours a day when they told me I’d be sleeping more than half the day. I stepped down by 1/3^rd this week, but it will still be over a month to get completely off without having the relapse of symptoms or withdrawal effects. So far, I haven’t had the withdrawal headache from this step down that I did when I last tried to wean off. After being on some dose of this for the majority of 4 months, it’s getting really old.

During the month that I was off (between surgery and radiation), I was actually able to work out and get some of my physical stamina back. I had started walking and jogging again. Now, I’m just too tired and don’t want to take away my physical energy needed to do the other stuff required of me. Once I start sleeping better, my plan is to restart the 5k running program. There’s a 5k charity run that benefits the National Brain Tumor Association in early May that I would like to do. I think that’s an attainable goal, even with my last chemo round being scheduled for that last week of March and my other major goal of the year being to pass the engineering certification exam in April.

So today, I stopped for Starbucks on my way to work. I was tired from my bad night sleep so I left work early to take a bath and a nap.  The family had pizza and cake at home. My parents sent presents for me to open, which was awesome. After homework, peeling oranges for kid school Halloween party tomorrow, and putting them to bed, C and I watched a movie. And lots of birthday wishes. It was a nice day.

Chemo schedule and weaning the steroid

I had an appointment with the oncologist today. It was a decent one, I guess. We decided on starting the 6 rounds of chemo (5 days of oral temodar with 23 day break) on Wednesday Nov 6th. Usually they do Mon-Friday but I wanted to start Weds because then the last two days would be on the weekend instead of work days.

I'm going to try weaning off the steroid again. We have a better, more gradual plan this time. Today is exactly 4 weeks after the last radiation treatment. Doctor said it could be 4-6 weeks for any possible swelling to go down, so by the time I'm off the steroid, we should be clear of that. I'm SO looking forward to sleeping more and eating less once I'm off this!!

I've updated the care calendar with a few needs during my chemo weeks for November and December, like a couple meals and some childcare for down time for Charles.Here's the login info. If you need our numbers or address, you can email Charles through the calendar. If you can help, that'd be great.

Carecalendar.org
Calendar number: 151231
Security code: 7678

Readjusting normal

The "new normal" finally caught up to me in the last few days. I think I jumped back into "mom machine" mode too early, taking on too many responsibilities and putting the family/house first. I needed the reminder that I'm still recovering and need to take care of myself too.

Work is definitely not the issue. I try to do 6 hours days, but I've allowed myself to knock out early by an hour or two if I need it. I'm still staying long enough to get the work done. Luckily, I haven't been overbooked on what's expected of me so it makes it easier to lend myself some slack with my hours. And now that long term disability has been approved (have I mentioned that here yet??), I will still get paid a percentage of the lost hours, which makes it even easier for me to justify the shorter schedule.

The issues are the before/after work routines and the fact that I can't sleep. I think the steroid is to blame here so I'm going to work out a weaning plan with the doctor at Monday's appointment.

I still am not sleeping through night, some nights even as bad as waking every hour. Sometimes that's my own fault with getting up to go to the bathroom, or my ear hurting (Seriously? That's still a problem??), or just plain waking for no reason. Sometimes it's Charles' fault for snoring, making funny breathing noises, or being restless (none of which he can control, obviously). Sometimes it's the kids, waking early or throwing up in the middle of the night. We've had a kid throw up in the night at least once per night for 4 of the last 12 nights, it's ridiculous.

Then there's the normal mom responsibilities and what's required of me due to schedules. I jumped back into those too quickly and finally allowed myself last night to realize I just can't do that much yet, but I also feel guilty having Charles do most of it. We are working together on trimming down our processes to make less work for ourselves. We already had the routine of doing laundry only on the weekends (except for pukey stuff). I've asked him to help more with dishes (or allow us to use more paper products, which is hard to propose to an environmentalist), pack lunches the night before, help make pre-made meals on the weekend to heat up during the week, etc. Hopefully we'll be able to come up with a new weekly routine that helps me recover while not over-taxing him either.

If anyone reading this wants to drop off a garlic and tree-nut free meal, we'd LOVE one any day :) (I think I also forgot to mention we took Grace to the allergist cause she had a reaction to a tree nut in a granola bar. She's fine with peanuts, but we're not sure what other nuts she might react to.)

Tired

I realize I haven't written much later. It's probably better that way. I've been pretty busy getting back into the working mom routine. I've been getting tired out after about 5 hours at work, which is good that I've committed to only 6 hour days. It's worse on nights when I don't sleep well, which is much too frequent. I maybe get 2 nights per week of straight 7 hours. The company is still wonderful about letting me leave early if I need to though.

We've worked out a schedule where Charles works from home Mondays and Tuesdays, so I go in to work earlier than I do the other days and get home early enough to go get the bigs from school, do snack, and cook dinner while he finishes up a full work day from home. Honestly, it's exhausting. I'll get a bad night sleep, get myself ready for work, be there for 5-6.5 hours, come home, get them from school, snack, play (which these two days have just been watching tv since I'm so tired), cook dinner, and help with bedtime. It's like being ON from 6:30am-8pm. Like I said, exhausting.

Then the other 3 days, it's getting up early to get ready before they are up, rush around to do morning routine before school, be at work for 5-6.5 hours, get home and hopefully be able to rest (since he should be home by 4 also), and then help with bedtime routine. At least in that schedule, I get to have a rest late afternoon. In retrospect, it might have been better to have the hard days be at the end of the week...

First week of work

I'm very happy with my first week of work. I fell back into the programs easily, which made me really happy. I'm working 6 hour days for now and there was only one day where I had to go home early, that was due to a really bad night sleep. I still feel extremely fortunate that I haven't ever had a seizure so that I can drive myself to work (and other places). It's been a busy week for me. I've had plans for 3 nights after work, mostly cancer support group type of stuff. I've been able to get ready and leave earlier in the morning than my planned schedule because Charles has been off due to the shutdown. So I'm not getting the kids ready for school anymore, at least not yet. And then I run off to my plans right after dinner and miss bedtime routines, so it feels like I haven't seen the kids much. Last night I was here for bedtime so I made sure to get lots of cuddles.

I was thinking I would wear my wig most days, but it makes me a bit hot. I still have scalp irritation so I have to wear the little skull cap underneath, which makes it hotter. So I've been wearing various hats too. I was hesitant to do this at first but sometimes while I'm at my desk, I'll go bare. I'm able to put some cream on and be a little cooler temp wise. At first, I thought maybe it would make some people uncomfortable but everyone knows what's going on and there have been some people that still come over and talk business as usual even with my bare head. Plus, I'm kind of at the back of the office now so I'm not right in the middle of the action. I do still put something on when I walk around anywhere though as to not catch anyone off guard.

I'll be rolling out new hats as I crochet more. I might also start using some of my multitude of fabric to sew some (gotta get back to pinterest!). I'm planning to donate some hats to the Hope Connections charity in Bethesda that runs a lot of free programs for cancer patients and their caregivers. They have a little "shop" of free jewelry and hats for cancer patients, just something to brighten their day.

Liam is having a harder time with school these days. I think the fatigue of going full days all week is finally catching up to him. He says the noise of the "stations" part of the day bothers him. He is melting down over the homework assignments, and then melts down about other things unrelated too. I think the last few days were worse because he was getting sick. He threw up in bed in the middle of the night last night. No fever or throwing up today, so we're hoping it was a random puke and not a puking virus that will make it's way through the whole family.

Young adults support group

If you can't tell by my time stamp, I'm up at 4am, been up since 1:30. Ugh. No sign of sleep coming soon. Kids will be up in 3 hours. 

Yesterday evening (technically yesterday since it's after midnight), I attended a support group for young adults with cancer. It was a smaller intimate group which was neat. It seemed easier to relate than the other group that was about 20 people. It's also a lot closer for me to get to and meets weekly instead of monthly. They have a group for caregivers too that I might make Charles go to. 

Might be a tired/short day at work tomorrow :(

First day at work

First day back was great. It was a milestone after finishing the treatment. It feels really good to get back to the normal routine and be in an adult (non-medical) environment again. Everyone was really nice and welcoming. I fell back into Revit and CAD more quickly than I expected, which was a pleasant surprise. I was even able to listen to music at the same time, yay!

I'm starting at 30-32 hours a week. I plan to do 6 hours a day, but I might end up going home early on bad sleep days or staying later on days when I feel rested. I'm so fortunate that my office is so willing to be flexible. I'm hoping that once the fatigue goes away, I can get back to 40 hours a week or more. As for now, IF the long term disability gets approved (still don't know yet), I can't work more than 32 hours a week or they'll terminate my claim.

I haven't decided yet if I'll be wearing my wig every day or not. A few people commented on how they like my hair and I came up with a quip on the fly when someone asked if it was mine. I told her "Yes and no. It's mine because I bought it!" She thought that was funny, so I think I'll keep that in my back pocket.

Charles is home from government shut down. He is looking forward to going back to work too. It's nice though to have him take over morning duty getting the kids ready for school. I think Liam is having a hard time with the change of routine, but overall the kids seem to be doing well.

More steroid. Blah.

The symptoms of brain swelling are back. Boo. Of course, I'm out of state this weekend and didn't bring the steroid with me (I thought I was done with it!!) but I was able to get an on call doctor to send a prescription to a local pharmacy. I, naively, assumed that since the radiation was over that the irritation was done and swelling shouldn't be an issue anymore. Wrong. I'm not a doctor so I guess I should listen to them. He tried to have me go back on the steroid Thursday when I told him about the headache coming back but I refused based on the steroid's side effect. Now look where I am, severe headache that doesn't respond to the pain meds and nausea/vomiting again.

Now that I'm back on the steroid, for who knows how long, I hope it kicks in and starts working! I don't want to miss out on even part of my first day back at work to be on a dumb IV for dehydration. I'm keeping up with the anti-nausea meds around the clock and trying to drink more fluids. It's hard though and I haven't been very successful today. I'm also concerned about being able to sleep, insomnia being the worst side effect of the steroid.

Okay. This can be over now.....

Weekend away

I'm on the train on my way to NJ to visit my parents for the weekend. I'm really looking forward to it and I'm sure it'll go by too quickly. Lots of relaxing and sleeping planned. Then dinner picnic Sunday when Charles and kids meet us halfway to pick me up. 

Then it's back to work Monday. It couldn't come at a better time. I'm so ready to be back. 4 months away from something you enjoy is too much. Plus, with all this political bs, we need my income. I hope the govt gets their act together soon. Charles is running out of things to keep himself occupied.

Unexpectedly sick

I thought side effects should be waning by now but I guess not. I was up spewing in the middle of the night with a headache to boot. I know, pleasant, but I'm being honest here. So I get to go in to the office this afternoon, the office I have an appt scheduled for tomorrow morning, for IV fluids and meds. I hope they can get the vein the first time!
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Update: I took a 2 hour nap before I went over to the office. There, I had a bag of fluids and IV zofran while I listened to some music and played games on my phone. They got the IV in on the first try. *impressed* I was able to eat a decent dinner, keep it down, help with bedtime for kids, and now just chilling and going to bed early.

PS. I am totally NOT impressed with our current weather. I literally just took the a/c unit out of our bedroom window last weekend and now we're hot again. It's not supposed to get back down to 70's until next week. I have all these great cold weather hats I want to wear! And one that I have no motivation to finish with this hot weather around.

PPS and not related to this post at all: I trimmed down the mohawk. It was barely blue anymore anyway and now that the irritant of the radiation rays are absent, I wanted to give my whole scalp the chance to grow back together. We'll see how it goes. I'm expecting to be wearing hats and the wig through the year til next Summer. By end of March, I will be done with the maintenance chemo cycles and the hair should be able to grow back a little thicker.

"Recovering"

It seems counterintuitive to recover from a treatment but that's what I'm currently tasked with. I took the last 1mg of steroid on Monday along with the last chemo pill until next month and last radiation treatment. I'm having steroid withdrawal symptoms; insomnia (still), heartburn, and headache. So it's 2:30am and I just took a small handful of pills to try to get back to sleep. 

Discharge nurse said side effects are cumulative so it's possible they could worsen or just appear out of nowhere in the next two weeks. Yay. Hear the sarcasm. More fatigue, headaches, skin irritation, digestion issues, insomnia, etc. Then in November, lets see how I handle the higher dose chemo. Woohoo (also sarcasm).

With Charles on furlough until who knows when, I am even more excited about getting back to my own job. A friend asked tonight if I like what I do and I was probably overly emphatic with my answer. I love my job! I enjoy my daily tasks. I like my coworkers. I love learning new things. I'm really looking forward to getting my certificate (april) so I can be a full time engineer. Plus, the office is about 4 miles from our house which is super convenient. And I'm so grateful that I have this amazing job to go back to. 

I have my mind set on getting back to my 5k training. Before my surgery, I got up to a two mile run at 10 minute mile avg. This time, I'm starting off in WAY worse shape. I get winded walking the bigs to school and that's .5 mile loop at five year old pace. 

I'm trimming down the hawk in hopes that everything can TRY to grow back in together. So this is what's left. Doesn't even look blue anymore. I've heard that hair can grow back differently after something like this. Maybe I'll have curls this time ;) although I hope not. I have no idea how to style curls!!

The back is already growing back but then again it didn't fall out in the first place. I had shaved it for the hawk about 4 weeks ago. So sexy, right? Think I can rock a g.i.jane??

100th post

Holy moly! Who knew I had so much to say! 100 posts since May and at this moment, more than 28,000 views. I can't believe it. I'm so honored that so many people are interested in my story, keeping up with me, praying for me. It's humbling.

Today is the first day I have the morning to myself. Charles had to go in to work for 4 hours, even though the gov't shutdown is in effect. We could be spending a bunch of time together this week! I have a to-do list for today that I'm already knocking stuff off from.

Of course, it's supposed to get up to 80* today and possibly 86* tomorrow, a week after I took the a/c unit out of our window and commented on how glad I am that Fall is here so I can wear my Fall/Winter hats. Silly Maryland weather in October!! This is why people get sick.

I took some pics of me and kids this morning to share.

Liam - 5 years old

Ellie - 2 years old

Grace - 5 years old

FINISHED!... for now

Last radiation treatment is over and I took the last chemo pill this morning too. Woohoo!! 42 day treatment course is OVER. I brought home the mask to have Charles' sister "art up" and donate to a charity that auctions them off and sends money to head and neck cancer charities. The office gave me a "cute" diploma for finishing. It's not one that any strives to achieve, but it was cute all the same. I took in some fruit and veggie platters for the staff as a thank you. Then we went out to lunch again. We also have a movie rented for tonight. It does feel like a weight lifted off my shoulders to not need daily appointments or an alarm set to take medication in the morning. I'm DOWN to only 2 required pills a day now! I think tonight, I'll shave down the hawk (gasp) just so that my hair has a fighting chance of all growing in at the same rate now that the main irritant will be gone.

The next step is scheduling the next rounds of oral chemo. It'll be 5 straight days of pills and then 23 days off. That will be 6 rounds of 4 weeks cycles. I am going to push off starting by a week so that I can avoid taking it during Thanksgiving and Christmas, so the first week will be November 4th. My next follow-up MRI will be end of November and then every 3 months after that.

I've updated the care calendar through the end of the year. I've put on some requests for meals and help with the kids during chemo week and the weekend after. It is hard for Charles to keep up energy and activities when I'm in bed all day. If you want to help, take a look and sign up for something:

https://www.carecalendar.org
Calendar ID: 151231 
Security code: 7678 

I'm not sure yet how I'll react to the higher dose meds. It's hard to tell if my current side effects are from the chemo or the radiation, so I don't know which ones will completely dissipate as time goes on or will return with the maintenance chemo.

I'm going back to work at least part time a week from today. I'm really looking forward to getting back into it. I miss the adult time and want to get back to my "new normal" as quickly as possible. I haven't decided if I'll be wearing my wig most days or if I'll rotate out other things. It takes more time to put on than a quick hat or wrap, but it at least would be stable for coworkers to see daily, especially the new ones I haven't even met yet!

So for this week, I just get to rest up, try to nail down a good sleep pattern, and deal with the emotional side of all this. Fight or flight response is wearing off and I'm not sure how to deal with it yet. Then I get to go visit my parents solo for the whole weekend. That's right, moms, I get a weekend away sans kids. Sleep in a king bed to myself with no one barging in at 7am, no having to get meals and snacks on the table, no changing diapers. And my parents are awesome, so we will be sleeping, eating, and getting massages. Oh yes, be jealous.

Now what?

This might seem like a dumb post, but basically I'm thinking, what do I do once the treatments are over? It's kind of a rhetorical question in that I will do what I have to and want to: recover, work, take care of kids, get into the next phase of "normal" while doing the extended chemo treatment every month.

But I've found my anxiety is just through the roof that last few days. Everything seems "urgent" like if I don't do it right now, write it down, or tell someone something, it just won't get done. I'm usually a lists person and even keeping one up to the minute updated on my phone isn't cutting my anxiety about it. I'm thinking this is stemming from the end of treatments coming up and my uncertainty of what the new normal will look like.

For so long, since June 4th really, we've been in FIGHT MODE. I do what I need to do and I get through it. We're coming up on my last radiation treatment and last chemo pill for this round (also, last steroid!!) on Monday. 3 more days! I'm so excited but also haven't emotionally dealt with what was going on because I was so busy just DOING it; making calls (SO many calls), going to appts, taking meds, sleeping, laundry/cooking/etc. Whatever it was, always seemed logistical and on the list. I could cross it off, even if it was "get meds to stop throwing up" it was cross-off-able.

Now I have to emotionally deal with my diagnosis and treatment. It's a good thing I have an appointment with my therapist on Wednesday because I have no idea how to channel this influx of confusing thoughts and energy. I'm sure the rest of the family is picking up on it too.

Rude strangers

This random rude lady at the pediatrician's office really has me riled up. I won't be able to go to sleep until I can write about it to try to let it go.

So recap: Husband, kids, and I are at the pediatrician's office for their yearly well visit this afternoon. I'm wearing an obvious cancer hair loss head covering. Random lady in the waiting room comes up and says something like "Are you in cancer treatments? My mom is just finishing hers. Can I send you something?" I was so taken aback and didn't know how to answer. This has never happened to me, so like a dumby, I gave her my email address thinking maybe she would want me to talk with her mom.

Fast forward to later tonight. I get an email from her, a very long one. It gives me her own whole life story and her mom's journey with a completely unrelated cancer, then proceeds to outline (thesis style) about the "series of emails" she's going to send me about all the research she's done about it because she wants to spread awareness and education. Yes. That was what she actually sent to me very verbosely.

My response: I appreciate you're spreading your knowledge to help advance people's understanding. But I was actually really taken aback by your forwardness to a stranger. I'm not in the right place that I want to accept unsolicited advice from someone I don't know, especially talking about it in front of my young children. Good luck to your mother and thanks again for the thought. I hope you understand.

I'm not one to be rude, but I'm now thinking of ways to respond when this happens again. Part of me wants to have the balls to say something like "You're so rude, especially in front of my kids. Why do you think you can invade someone's privacy in public? Leave me alone." But I don't think I'd be able to do that unless they start in on something that I can't get them to stop talking about in time. I WOULD be willing to just say "STOP. My children are RIGHT HERE." But I have come up with my 30 second "leave me alone" speech that I'm more comfortable with and have memorized:

I appreciate that you're trying to empathize with me, but I won't talk about this with you especially in front of my family. I don't need your advice and I can't shoulder the burdens of someone else's struggle. Leave me alone.

I feel that's fair and polite enough that I won't beat myself up for crossing my own moral "bitch line." I would hope that it would at least make them think about how it was not right to do it. I find it akin to touching a pregnant woman's stomach or the person's newborn infant unsolicited. Really? How dare you cross such a private line?

There ARE ways for strangers to recognize and help. It would be nice things that decent people should do anyway; hold open a door, offer a seat on the metro, etc. Talking to a stranger is NOT helpful, no matter how well intentioned they are. And you'd be surprised at how no one will give up a metro seat, or will even purposely squeeze in front of someone who is obviously going through cancer treatments (or even an obviously pregnant woman). Part of this journey opened my eyes to the good in humanity and part of it has now opened my eyes to how inappropriate people can be.

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Update: She actually responded to "apologize" but ended up still pushing her wordy agenda. I'm choosing not to respond at all even though part of me wants to really tell how even her response was inappropriate but obviously it wouldn't get through anyway.  I just have the mental task of trying to let this go so I can go the F to sleep!!

One week left!!

Exactly a week from today, I will be finished with the radiation and 42 day chemo treatments!! I'm so excited. I'm also a little nervous. The doctor said I could have a honeymoon of feeling better and then a crash. Total "recovery" from treatment (WHY?!) could be 4-6 weeks. And then on top of that, I only have 4 weeks break anyway before starting the next round of oral chemo, which I don't know how I'll react to either. I think with my age and good health before all this, I may be able to recover pretty quickly though. It will help if I can get off the steroid all together so I can sleep.

I take the last chemo pill and have the last radiation treatment on Monday the 30th. Then I have about a month off. We'll decide at my appointment on the 3rd what day to actually start and when to schedule my "new baseline" MRI. The next phase is 5 days of high dose oral chemo and 23 days off of it. This repeats 6 times. I should be starting the first round probably the week of my birthday and Halloween. I may try to fudge it either direction depending on how it will line up with holidays. I don't know what my physical reactions to the higher dose will be or when they'll happen (during those 5 days or after?) and I don't want to be at my low point in the cycle during Thanksgiving and Christmas.

I'm counting my blessings though all this shit though. I have an amazing job to return to. While we do have high medical bills, we are able to space out the payments to make it more manageable and our portion is literally hundreds of thousands of dollars less than if we were without medical insurance (so far racked up $140k in costs). While I'm unsure of the long term disability insurance being approved for the next few weeks and covering the other hours of the weeks that I might not be able to do full time, we've had good short term payments for the last 12 weeks and were able to retain our fabulous nanny. I haven't had any seizures so I still have my independence with driving and especially going to/from work. Friends, family, and coworkers (and in some case, strangers) have been so generous to us that we're covered for food for our family through October still! And the biggest benefit of my C card so far has been using it to negotiate a lower rent increase for our 16 months renewal.

The kids are all doing well. Charles and I both have a shorter fuse than normal (worse on less sleep) but we're both consciously making an effort to try to reign it in. We have 5 year olds who are testing every boundary, and a 2 year old that is determined (her biggest personality trait!) and she's.... well.... two. Grace wants to know that we mean what we say so when we threaten something, we HAVE to follow through. They're inquisitive, which is great, but takes more patience on our part to appropriately explain why we're asking them to do or not do something so they know there's an actual reason and we're not being bossy. Then we wait. and wait. and wait. for her to take her dear sweet time doing anything and EVERYTHING. It can be SO frustrating sometimes.

We are holding off on potty training Ellie since she refuses to even try when we ask even when she's got a dry diaper. We're also holding off on turning her crib into a toddler bed. The mattress is on the floor inside the crib (crib bottom is low to the ground) so she isn't climbing out yet. But she also gets up at 5:30 some days. We're not in a rush to allow her freedom that early in the morning or the option to skip nap more easily than she already does. We got her a "night owl" that turns green at 7am to let her know it's okay to sing and wake up the whole house, but it glows pink all night and instead of having a "green means go" attitude to the green light change, she just gets pissed that it isn't pink anymore! She's such a pip.

As far as how they're relating to my disease, they seem to be doing fine with it. They will ask questions occasionally or we'll tell them they can ask us anything about it. They still understand there was a "boo boo" in my head that the doctor took out. I go to the doctor every day to make sure it stays away. I take medicine that makes my hair fall out and makes me tired sometimes. Most people we know already know that I'm sick so we don't have to tell them and they won't make fun of me for not having hair. Liam is very worried about "people will laugh at you" if I go outside without my head covered. That's all they need to know and it's enough for them. I think we'll wait until they're old enough to understand, without fear, what the medical terms mean. I don't know when that will be, but definitely not for another couple years.

We still try not to talk about it in front of them, but then there's people like the woman in the waiting room at their well visit pediatrician appointment this afternoon, who took it on herself to ask if I was going through cancer treatments while Grace was standing right there and say her mom is going through breast cancer treatments. Really? I mean it's obvious since I'm wearing a new "I have cancer" head covering, but is there no privacy to strangers? How do I respond to that? I'm not going to give my life story to a stranger in front of my kids or even by email, or in the mood to accept unsolicited advice. I need some zingers to put people off. I'm not usually someone to purposely make someone have a WTF reaction, but I do really need something to make people back the F up. It's like when stranger touch a baby or a pregnant woman's stomach unsolicited. What about cancer makes people think they can pry into a stranger's life?

Anyway, done with that rant... for now. Charles and I had a lovely day today. He decided to take the whole day off, which was really really nice. Despite having a medium-low night sleep (for both of us, even in different rooms), we were able to go get a starbucks coffee, go to the appointment together, have a nice lunch out, and then a half hour walk in the lovely weather before the nanny had to leave. Then we hung out alone together while Ellie napped before we took the kids to their well visit in the afternoon. Cousin Luke came to play with Ellie which was great too cause then we didn't have to take her with us to the appointment. Man, the one on one parenting of that appointment brought it into clear focus just how much easier it is with 2 kids!! Not that I don't enjoy having 3, just an observation!

Long update. Thanks for hanging in there with me.

Getting through it

Single digit days left!! Last radiation treatment AND last chemo pill is the 30th.

It's been a rougher couple weeks than the first two. I've written about the other side effects I've had so far: the headache/vomiting episode, heartburn, fatigue, heart palpitations, etc. The most recent is this chest stuff. I am having chest pain from anxiety, get tired out even going up the stairs, heart palpitations sometimes every few minutes. The anxiety from the symptoms makes them worse too so it's a bad cycle. Luckily, the medications seems to be helping, except the steroid, which makes some things much worse while helping others. I am stepping down the steroid now, thank goodness, but my headache came back this weekend so I'm concerned I'll have to stay on the lowest dose longer term possibly through all of October. At least I'm sleeping better overnight now that the dose is lowered.

The doctor talked to me Friday about the "recovery" from the treatment. It seems weird to say it that way, but it does take time for the side effects of treatment to dissipate. The main symptom is the brain swelling, which is why I am thinking I'll have to be on the steroid for the recovery period. She said there will probably be a honeymoon period, not sure how long, where I'll feel better. Then there will be a crash of energy and total recovery could be 4-6 weeks.

I am planning to go back to work the Monday exactly a week after the end of treatment. I am hoping to get at least one good week of work in before the tiredness sets in and I have to cut back some hours. I also start the 5/23 schedule of higher dose chemo at the end of October (I think I'll be on it for my actual birthday and Halloween) and not sure how I'll react that week or the following week. This is the time when I do 6 rounds of the chemo, 5 days taking the pills and 23 days to recover. The first "follow-up" MRI, baseline, will be end of October too.

At the end of the second week of work, which will be about 2.5 to 3 weeks after treatment, Charles and I have a trip into DC scheduled. His wonderful parents got us a hotel room for 2 nights and are watching all the kids so we can have a weekend to ourselves to be tourists. It's a combination celebration for Charles' 30th birthday, my upcoming birthday (not 30!), our 7th wedding anniversary, and end of treatment. We have lived metro accessible to DC for 12 years and only get in to do the touristy stuff about once a year, around Cherry Blossom time when/where he proposed to me in 2005. This will be a great trip for us and I hope my fatigue doesn't dampen it too much. We're considering renting a wheelchair if I need it.

Tonight, I have a social mixer in DC for a "Young Adults with Cancer" support group. It's for people in their 20's, 30's, and 40's. This will be the first event that I attend with them. I'm not sure what to expect really but it'll be nice to meet people in person who are going through or have been through what I am. I'm naturally and introvert so events like this tend to tire me out.

I'm radioactive!

Friday update: No blood clot in lungs, no brain bleed. I can start to taper off the steroid!! Hooray! Best news all week. Off to my treat retail therapy!

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I had a couple extra imaging tests this week that were unexpected. The last few days, I've been getting frequent heart palpitations, winded going up stairs, and generally more tired. The oncologist wanted to make sure I didn't have a blood clot in my lungs, so I did a chest ct with angiogram. The iodine for that is not good.

Then the other oncologist wanted a detailed MRI to make sure my severe symptoms from two weeks ago weren't due to a brain bleed. Took a week for authorization for that so it wasn't until this afternoon. More contrast for that one. So in addition to my normal daily radiation treatment, I have 2 types of contrast dyes in my system! Yummy! Do I look bright green yet? Hulk smash?

Anyway, no blood clot, at least not one that they would have sent me to a hospital for. They kept me a few minutes after yesterday just in case there was an emergency situation on the scan, but I don't have the official "all clear" yet. They don't give any indication at all today about the brain bleed possibility, so I do have to wait until the office gets the results this afternoon or tomorrow (not banking on today). I'm not expecting anything too bad since I'm feeling not too terrible right now. I'm tired and my heart beats out of my chest often, but I'd be far worse off if I had bleeding in my brain or a blood clot in my lungs.

I learned a new term this week: No Evidence of Disease, or NED. I like it because it seems so neutral and scientific. Remission makes it seem like a break before another storm. There is no "cure" so that's not a word we can use. "Cancer free" has the C word in it, so that feels aggressive to use. NED just seems matter of factual; we can't tell there's anything in there so for now, we'll see there's no evidence of the disease. Boom. Done. Then we just hope and pray for no new evidence of the disease FOREVER!! So yes, NED is my goal. I'm pretty sure that'll be how it is anyway since immediately following the surgery, they couldn't see any remaining cells on the scans.

Sleep still sucks. Well it doesn't if you can actually get some, it sucks when you can't. Last night was another night of 2 hours of sleep for me. I really want to get the clean MRI report so I can step off this devil medicine!

Problem solving!

Necessity is the mother of invention right? Remember that (trivial) complaint about my ear hurting when I lay on my side? I made this soft, little ear wrap to deal with it. And it actually worked! The fat part rests behind my ear like a hearing aid. I need to make a second so I don't have to switch it when I turn over. I'm probably a little over proud of myself for this, haha. I just thought it was neat that I was able to craft my way out of an issue instead of throwing medicine at it.

Rough evening

I understand on days like today, more than any other time, how important sleep really is. Last night was one of those nights I was awake for several hours in the middle of the night. I didn't do too badly for most of the day. Still very thankful for my support army that is giving me rides to my appointments and sometimes on errands too. Starting late afternoon, I was getting heart palpitations. After a great playdate, I went upstairs to rest then came down for dinner. Now I'm back to resting again. Whenever I get out of bed, even to go to the bathroom, I get palpitations and feel "funny" so I think I'll take a rest in bed and go to sleep early night.

We tweak my meds for one thing and then another happens. Seems like things are going well when something else pops up. Hopefully a good night sleep will set things right.

New hair... again

So the treat for the end of treatment week 4 was a new hair do! It's considered a "cranial prothesis" so it was actually covered under insurance. My mom covered the extras (wig stand, caps, shampoo, etc). We had a fun time trying them on and deciding on the right one. The one I ended up with looks very similar to how I had it cut before the surgery but with more color variation. So going to church, I was less conscious about how I looked. And Charles, with his mohawk, seemed more self conscious as a result. I got compliments on my new hair do (not in front of Grace, so she couldn't blurt out that it was a wig).

I wore it Friday to pick up the bigs from school. Grace said very loudly several times, "I LIKE YOUR WIG, MOMMY!!" Haha. No subtlety there. I was flattered and embarrassed at the same time. So now we refer to it as "my new hair" so that the word "wig" will come up less in public or to complete strangers. Ellie likes it more than when I'm without it, but I do need a break from having it covered since I have some irritation and losing some of the mohawk still.

Liam had a hard time with the change. I think he was just getting used to the baldness with blue mohawk so the "regrowth" of hair was a little unsettling for him. I've been alternating between the new hair, hats, wraps, etc, and just being without anything at home so it's changing several times a day even. He said to me over the weekend "Why does it always go long, short, long, short, long, short?" Poor kiddo. We explain that the medicine I take makes my hair fall out so sometimes I'll have the new hair and sometimes I won't.

I'm debating about using the actual medical terms for my illness with them. Right now, we call it a "boo boo in my head that they took out, and now I go to the doctor every day to make sure it stays away." I'm wondering if the words cancer or tumor would be too much for them. With how Grace is so vocal about my "WIG", I'm not sure I want her going around saying things like "My mommy has cancer!! And it makes her hair fall out so she has a WIG!" These 5 year olds!!

I have a weird complaint about sleeping and no hair. I've always had long hair or at least a little behind my ears. Now that there's nothing there, when I sleep on my side, it pushes my ear back against my head and makes them hurt when I wake up. I know men and boys with buzzed hair or bald head deal with this all the time, it's just a nuisance I'm not used to. I'm planning to crochet a little headband to tuck behind my ears at night for padding. Solve any problem with crafting!

Ugh, this is hard

I am talking to my physician again today. This dang headache still won't go away. I hope there's another way to deal with it than more steroids. Even the current dose is keeping me up at night. Last night, I took every pill in my arsenal and still took until 4am to fall asleep. Then the youngest was up just after 6am. The insomnia is unbearable. It makes me very spacey during the day. Not to mention the wicked heartburn from the steroids too. Ugh!

At least my nausea and vomiting is under control. I take an unbelievable amount of medication in one day. I haven't even counted how many. I'm starting to feel like I have my own pharmacy at home, under literal lock and key safe.

I miss working. I am starting to gain more muscle memory for my crochet so I'm hopeful it will be a quick turn around time for my drafting skills. I miss the new stuff I was starting to learn too like checking shop drawings and new functions in Revit. I'm hopeful I can get back to the office at least 30 hours a week pretty quickly after the treatment is over. It will probably depend on my brain's reaction to the full course of treatment. These steroids make me pretty miserable most of the time.

I have noticed some concentration issues that I may have to make some accommodations for. I used to be able to multi-task a lot better. I could read a kid's book, that we've read 100 times, and be able to think about other things while I was reading. Now, I really have to concentrate on every sentence or I get mixed up quickly. So I can't let my mind wander. It makes me wonder if I'll have to stop with my work "entertainment" like music and even comedy podcasts. Not that it would be a terrible thing, I would just miss it. Music might be okay, but having people talking in podcasts would probably be too much.

And I am still constantly amazed at our wonderful support system. I reached out for rides for the rest of the month and the schedule has filled up so quickly. I love seeing the friends and family who come to help out or just hang out. I still get support cards, which are really nice. I have some very thoughtful and generous friends, too!

A new new do

So over the last few days, I've lost about 1/3rd of my hair. It was very very noticeable. Over the course of this whole disease, I've only cried a handful of times; when I first found out, a few times during post-surgical pain, this week when I couldn't eat or drink for 24 hours, and then yesterday when I actually started to feel sorry for myself.

So I decided to let myself feel bad, for like 15 minutes, and then do something about it. I went shopping and got a hat and scarf from Old Navy (thanks to my sister for a gift card). I cut up a couple t-shirts to make into head wrappings (go youtube!) and then decided to go drastic with my hair.

I had two very large gaps on either side of my head. I'm reluctantly going to post the before picture just to illustrate the severity of the loss. I decided to go "punk" for now as a big F U to brain cancer. I shaved the majority of my head and left a strip down the top for a mohawk. Then I did what I've always wanted to do, but was either too afraid to or was trying to stay professional; dyed it blue! So here's the pictures of before and after. Charles is amazing cause he did all this with me to show support!

Having my head covered makes the skin sensitive so I wanted it to change it to something that might be a shock for the kids, but at least not ever changing so I could let it air out a bit. "Stable"-ish, I guess. They were already used to the shorter hair. We had prepped them a lot about it and I had it short for a long time. This time was harder on them. We were all wearing bandanas and hats earlier today as a "bandana family" in solidarity.

I let them see my head after shave, before dye. Ellie wouldn't come near me (like when I got it chopped the first time). Liam kept asking for me to put the bandana back on. Grace likes it and is upset I won't do the same to her hair. Although they all do want the blue, which they can't have, cause apparently it'll stain stuff even after it's set.

I just wanted to write this post so that people who see me in the near future aren't taken by surprise. I'll be wearing head coverings in public most likely, but some of you will see me at home.

I also want to keep this blog as honest and forthcoming as possible so that when people like me go searching the internet for blogs about what's happening to them, they'll know they're not alone. And they'll know what one of their peers did about it.

This is not for the faint of heart

Yesterday was a rough day for me. I wasn't able to hold down anything to eat or drink all day. Thank goodness for good people that drove me to my appointments because I wouldn't have been able to take myself. I took my puke bucket to the radiation appointment and talked to the doctor after (that doesn't happen every time). She said my sudden onset of new headache, that wouldn't respond to my pain meds, and severe nausea could be due to brain swelling from the treatment, so I'm now on low dose steroids for a few days until the symptoms disappear. If they come back after I've weaned off, I may have to be on them longer term.

By the time I went to my appointment at 2:30pm, I was in really bad shape. I had kept down the steroid, a few sips of gatorade, and 3 bites of mashed potatoes so far all day. It took 3 needle sticks to get their blood work (my normally small veins were even smaller). The P.A. took one look at me and said we should do an IV with anti-nausea meds and a full bag of saline fluids. We worked out a new system for my daily nausea meds too, so I have new prescriptions. They had a hard time starting the IV too, so all in all, I had my arms poked 5 times yesterday and I'm feeling it today. I was resting in their chemo chairs for about 2.5 hours surrounded by people getting iv meds much stronger than mine (iv chemo). By the end of the first hour, I was able to suck on hard candy. By the end of the 2nd, I could eat a bag of rice crackers I had brought with me in my purse. I think I should keep my crochet bag with me, in case I need to do that again. That would be a great time to pass the time, other than playing on my phone and wondering when it would run out of battery.

When I got home, thanks to a ride from a wonderfully kind person, I wolfed down a full container of Simply mashed potatoes and half a jar of gravy (kept it all down btw). Charles and the kids had gone to get my prescriptions, so I had a few minutes to myself. Once they got home, it was obvious "the baby" hadn't slept that afternoon. She went straight up to bed and I read to Grace and Liam for a few books. Then it was my turn to go to bed. I was knocked out by 7pm and slept until 6am! I know every night won't be like that, but I'm so glad I was feeling better enough to get some good rest. For the 2 nights before that, I was up late trying not to, or actually throwing up.

This morning, my hair is starting to fall out. It's not in clumps like people imagine, at least it isn't yet anyway. I would compare it more to losing hair after pregnancy. You know when you're pregnant, your head grows hair thick and crazy fast, and holds onto every strand. Then when you have the baby, it's like "Oh, you were actually supposed to loose a little of it as we went along like you usually do, so here's those 9 months of hair you weren't supposed to hold onto." Charles reminded me this morning that it will probably be the opposite of that. I'll loose it all at once and then it will take 9 months to thicken up again. He's probably right.

Anyway, there's my update for week 3. Not a great one. When they said this isn't for wussies, they meant it. Luckily, we have rides lined up for almost all of my appointments from here on out, so I don't have to worry about if I have a bad night sleep (other than just the general worry of being tired) and Charles has said he'll be "on call" for the morning if I can't get out of bed to get the kids ready for school. I have more anti-nausea meds on hand, even some I can take without actually swallowing the pill. Hopefully, I won't be adding "sunburned" scalp to this list of symptoms! But I will deal with it if/when I do.

Continued prayers and kind thoughts are nice. I got a couple nice cards in the mail a few days ago which lifted my spirits. If anyone is around to play with the kids on Monday afternoons from 3-5pm, or any afternoon from 4pm-5ish, that would get great help for us. Charles has been getting in to work late from staying in later in the morning so he could use the extra hour in the afternoon to stay late. Some afternoons are just rough for me to have all the energy around and then cook dinner. On Mondays, it is the nanny's half day, so I take Ellie from her nap and walk to get the twins from school. So if people are around in the late afternoon that want to come play, that'd be awesome. Or if you want to drop off a meal any day, we'd really appreciate it (still garlic free, as a reminder). Thank you to everyone who has helped so far and are continuing to help now. It means a lot.

Asking for more help

Hi friends and family,

I'm starting to feel fatigue now from the treatment. I nap at least once a day. Earlier this week, I was awake for 5 hours in the middle of the night. Obviously, it made me nervous to drive, being so tired. So I'm now asking for some help with driving me to appointments. They don't take all that long round trip since the office is in Bethesda and the appointment is only about 20 minutes. If anyone is around to give me a ride, it would be much appreciated.

Also, our nanny only works half a day on Mondays, but Charles needs to work all afternoon from home after taking me to the appointment in the morning. If anyone is around Monday afternoons starting at 3 for a couple hours, we'd love the company and playing with the kids so I can start dinner. So I put a few "childcare" needs on the calendar.

I took our street address off the calendar because of the public nature of all this blog. If you sign up for something and don't know how to get to our house, you can email Charles (coordinator on the calendar) or me for our address and a map of where to park. Or if we're running down to the wire, you can call me to meet you out at the parking lot.

Thanks in advance!!

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To access Katie Bevington's personal CareCalendar site,
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     CALENDAR ID   :   151231
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Feeling some fatigue now

I wasn't expecting it so soon, but I'm already feeling fatigue from the treatments. Today was my 8th radiation and I started the 2nd week of chemo yesterday. The oncologist said fatigue during second week is normal. Yesterday, I was really dragging to get myself to the radiation appointment and was doing the "Stay awake! Almost home and then you can nap!" thinking on the drive home. I slept for 3 hours after that. Then I went to bed pretty easily right on time, but when I got up to pee at 1am, I couldn't go back to sleep for 5 hours!! And Ellie cried at 5am, so I think I got a total of 3.5 hours of broken sleep last night.

Thankfully, our nanny (and her helper Ellie) was ready to give me a ride to treatment today and I can sleep whenever I need to until 4pm. I'm thankful my short term disability is still active for a while and we're getting somewhere with long term disability. I don't know how people can work through this fatigue.

The nausea is still manageable. I've tried to forgo the anti-nausea meds and end up needing it around lunch time. Sometimes I have a hard time falling asleep at night from the nausea, but the meds do help. I've decided to treat myself to something on Fridays just as a thing to look forward to and patting myself on the back for another week. Last Friday was Starbucks coffee and scone. This week will be a new lounge outfit. I think I may have written about this idea before but can't remember without going back to read it... "chemo brain" has replaced "mommy brain" lately. Thank goodness for alarms and lists on the smart phone.

I am still trying to exercise. I walk the kids to school every morning which is about .6 miles round trip. I do that twice if I pick them up in the afternoon, which I only *have* to do on Mondays but can send Ellie and Constance in the afternoon the rest of the week if I'm not up for it. It's been REALLY hot a few days this week so everyone comes home red faced and ready for drinks/snacks. No tears on the first day of school, not for them and not for me. I'm glad they like it! They are tired though, Liam was laying around on the floor this morning until we left and Grace slept on the floor of their room last night.

I've been doing more crochet. I am about to finish my second hat. I got all the way through before I realized I was doing a triple stitch instead of the double stitch that the pattern called for. Oh well, I'm not going to undo it all. It'll just be a little longer. It was a slouch hat pattern anyway.

First week over

Friday last week marked the first week of radiation finished. That was 5 in a row, with 25 more to go. Because of Labor Day Monday being off next week, my radiation will continue to 6.5 weeks instead of the normal 6, cause we have to get up to 30 treatments. Radiation is going alright so far. I have a little tenderness in my surgery scar, but I can't tell if that's normal healing or being aggravated by the radiation. The procedures don't take long, about 20 minutes from in the door to out as long as I don't get there too early and end up waiting. Laying on the table is like 5-6 minutes.

Tomorrow will be the official start of the second week of chemo (since I started on a Tuesday). That's not been too terrible so far either. I do get some nausea. It reminds me of morning sickness. I will get about 3/4ths of the way through a meal and then not be able to finish it. And of course, it's the worst right at bedtime. There's been a few nights when I take all the anti nausea meds in my arsenal, and antacids, and spend a couple hours sitting upright in bed to try to fall asleep. I feel badly for Charles more than me since he gets up at the ass crack of dawn to go to work so getting to sleep on time is more important for him.

Charles' 30th birthday was on Saturday and we had a party at a local park. That turned out well. I was impressed by myself to get it all together, run errands, set up, clean up, etc. We got to see a few people we haven't seen in a while, meet a couple babies we hadn't met yet, and generally have a good time to celebrate my best friend and partner.

I got my hair trimmed up again over the weekend too. I went to the cheapo Hair Cuttery since I didn't really care if they butchered it. I just needed it shorter since it'll fall out in patches and I didn't want the rest of the hair that stays to get unruly. They actually did a decent job for a $16 cut (keep in mind I paid $65 for the first chop I did). I even took Grace back there for a kid cut yesterday before school today.

Speaking of school, the bigs are there right now. First day drop off went really well, no tears (while I was there). They were just excited to get in there which is what we were hoping for. We'll see how the day goes and then this first week. I imagine it's really hard on the kindergartners to go full days for a full week to start. 3 day week next week though since the MCPS calendar has so many holidays in it.

Overall, we've all had a good week, despite the circumstances. I've decided I'm doing little treats for myself on Fridays to celebrate another week over. Last Friday it was coffee and a scone from Starbucks. This Friday, I want to get another "lounge around the house" outfit. You know, the comfy kind you would barely let your mother see you in...