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.