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